HELP ME!! Severe stomach pains and the lot

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Hi everyone..so this will probably be a long story but I really really need some help! 

I’m 20 years old and ever since the age of 10 I’ve been having weird stomach pains. At least once a month I would have a stomach pain attack which usually lasted the whole night. I was prescribed with the regular lansoprazole and ranitidine when I was young to get rid of the pains which did not work. 

I was referred to a peadatirician for something completely unrelated when I was around the age of 14/15. I had a blood test once there and my peadeatirican had asked me whether I was ever tested for coeliac (bare in mind she had no clue as to my stomach pains and knew nothing of the sort). I told her I had never been tested for coeliac (which I never had a clue about what it was) and I had asked why. As far as I could remember she had said something along the lines of something antibody related had showed up In my bloods that indicated that I could have coeliac. Anyways, long story short, this ‘finding’ made by the paediatrician, was NEVER put onto the system nor was my GP informed about it. I was too young to understand what was going on and so I never chased this matter up. 

Months or years later (I cannot exactly remember) My mum and I had then worked out that every time I had bread I would end up in pain, so we made steps where we cut bread out of my diet. This did make a difference, however I would still have nights where I would be in excruciating pain. 

So anyways my symptoms started to become worse, which includes severe stomach and back pain, nausea, extreme tiredness. I then began to cut out gluten products out of my diet. This had helped a lot, yet I would still have these attacks. I was referred to a gatroenterolgist who tested whether I was lactose intolerance. The test was normal. I had also been given a gastrocopy which also was normal. Numerous blood tests to check for coeliac which were also normal. I didn’t have a colonoscopy though. The doctor had nothing to say so referred me to a dietician who also did not help. In the end I was told I had IBS, and was given buscopan and also had mebeverine. Both did absolutely nothing whatsoever! 

 

Although I had cut gluten products out of my diet I did still have the odd bites of a cake or have a biscuit. At times I could get away with eating bits of gluten products, however other times I would be in a lot of pain. 

I’ve been going back and forth to the doctors many many times. The fact that I was not diagnosed with coeliac sort of made me be a bit silly and lenient with my gluten free diet. 

I have been once to A&E and they had taken my bloods which were normal and gave me Codeine and sent me home. 

Now the pains I have are becoming more regular, the last time I went to the doctors I had told him the whole situation. He said at the time I was referred to the gastroenterologist I wasn’t eating any gluten which may be the reason my endoscopy and blood results were normal. He said in order for a coeliac test to be accurate, I would need to be eating gluten in every meal every day for 6 weeks, this would then allow my body to react to the gluten which would then show up on the results. However, both me and my doctor agreed at the fact that if I was to eat gluten every single day for that duration would make me really ill and I cannot afford to do that as I am a uni student and I do not want to put myself through any pain. He then told me to just cut gluten out completely and live life like I am a coealic despite the diagnosis. He had also said that there’s no point in the diagnosis as you don’t get free gluten free products by the nhs anymore. Which I had then told the doctor that I am not doing this for free products, I simply want to know what is wrong with me and how to get better!!!!!

Currently I am still suffering! It has gotten a whole load worse and I’m sick of being ill nearly every single day. The hot water bottle has been my best friend since I was 10, and I’d rather feel the pain of the burn from the hot water bottle than the pain of whatever I am suffering. I can’t sleep at all with the pain and the pain is constant and lasts just over 12 hours. My stomach feels so sensitive and with everything I eat I am getting symptoms either mild or severe. At times when I am asleep I wake up from sharp pains in my stomach and back and chest, which make it difficult for me to fall back to sleep. When I don’t get any sleep, it makes the next day horrible as although those symptoms have cleared up, I am left with being so tired and with a migraine. 

This morning I had had 2 gluten free egg pancakes, a cup of tea with 2 gluten free digestive biscuits..an hour later my stomach began to hurt, now (currently 9pm) I feel sick, my whole back hurts and my whole stomach/ abdomen hurts especially my right side. 

Before when used to get the pain whenever I passed wind I would feel some relief (with the help of simeticone) , however now I feel no relief whatsoever with passing wind. I don’t suffer from any constipation or diarrhoea. In the last 3 months on two occasions I have had very very pale coloured stools if that may mean anything. I have been low in iron and vitamin D since a very young age. My heamoglobin levels dropped to 5 last year, however after two iron infusions I am in the normal range and not anaemic anymore. In terms of the gynea side of things, I have had an ultrasound which showed a thickened endometrial lining, after three months of taking medroxyprogesterone (provera) my recent scan has shown that my lining has shed and is now normal. Other than that everything is perfectly fine in that department. I have occasions where I loose weight and then pop it back on. I have currently lost half a stone in the last few months which I do not understand why. I do also have psoriasis. 

The order of events may be a little mushy as I’ve tried to remember a whole 10 years of events that are important to mention. 

1 like, 15 replies

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15 Replies

  • Posted

    This could be IBS or a gallstone attack . The attacks start slowly over time from one or two attacks to very severe attacks. It may take several tests to exclude other things which is in general how diagnosis thru test by elimination for different stomach disorders to locate a diagnosis. Don't give up keep searching for a diagnosis.

     

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    • Posted

      I’ve never been tested for anything along the lines of gallstones, thank you for suggesting that. And you are right, I cannot stop searching for a diagnosis 😩

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    • Posted

      Hi sarah 31860

      Regarding pain in your back as well as stomach it may be associated with your pancreas. Ask your doc to test your Amylase and Lypase pancreatic enzyme levels....

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    • Posted

      Sometimes it's as simple as X-rays other times diets changes can help, basicallynits doingnwhatbthe docs call diagnosis by elimination untilmthendiagnosis idmdound. Try to keep a food journal of the foods you eat and learn what some of the food triggers that start the pain. 

       

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    • Posted

      I will definitely request that! The doctors will think I’m off my head and I’ve been googling stuff but I need this sorting out ASAP. Thank you xx 
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  • Posted

    Hi Sarah, as an ibs sufferer your pattern of pain doesn't match what I would expect to read!  There is something else going on you must ask for more help.  Where is this pain and if it is making you sick is it gluten that is causing it?  I was told I was wheat intolerant 10 years and I am not.  I have something called diverticulosis that means flare ups in the bowel.  Is it possible you have grumbling appendix or diverticulitis or something else?  There's tonnes of organs in there and you've obviously got something nasty going on to cause so much persistent worsening pain, but it may not be too painful and I am sure it is fixable.  Push your doctors go back and go back until they DO something!  Oh and good luck.x

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    • Posted

      Thank you so much for taking your time out to reply to me. I’m sick of being told I have IBS. The pain is all over my stomach (lower/upper including chest) Mainly on the right and also on my back. Although I do not eat wheat I wish there comes a time where I can eat it again! The struggle is real. I will definitely go back to the doctors ASAP x
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  • Posted

    Hi sarah

    Keep to the wheat free diet its better for you.  Have you had a colonoscopy or an ultra sound on your gall bladder as your pale stools and pain may be due to a blocked gall bladder. Ask your gp to refer you for a gall bladder scan.

     

    Take probiotics from holland and. Barrett 20 million they won't do any harm and they help with regenerating the natural gut flora .

    Hope this helps. 

    Regards lorraine stanley 

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    • Posted

      Hi Lorraine, I have not had a colonoscopy or a ultrasound.  My mum suffered from gall stones when she was young and had her gall bladder removed, so has my auntys and uncles. So i will get me gall bladder checked out. Thank you for taking your time out to reply xx
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  • Posted

    Hi again, just an update 

    I went to my GP today and he said that in 2014 I had all the necessary tests done and that ruled everything out basically implying I don’t need further tests. I told him that was 4 years ago and a lot can change! My pain has changed since then as well. I myself requested an ultrasound and also a blood test for the enzymes. But guess what, he prescribed me with ANTI DEPRESSANTS. I am 20 years old and this is what he prescribed me with. I am not depressed. And this pain is not in my head 

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    • Posted

      Hi sarah 31860

      That is absurd diagnosing from 4 years ago!!...as you say a lot can change, don't take the AD's your not depressed you have something going on in your abdomen. You have to see another doctor at the practice. Don't take no for an answer have you a lady doctor you can see there they are a bit more sympathetic.....as a matter of interest what AD's did he give you.....

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    • Posted

      Is your doctor having a laugh at your expense.  You know you're body and know if it is right or not!  I'd ask for another doctor to see, I have had tonnes of tests in the last few MONTHS let alone years as I felt my health was so important and if I didn't like the doctor's response I'd speak to someone else.  Push to see someone else and if you don't get the response you feel you deserve then ask to see the manager, hopefully they will listen.  Duty of care?  Does your doctor know about that?  Good luck.x

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  • Posted

    The pain is not in your head. See another doctor. How crazy 😝 to be dismissed like that,and pain is real need to push for a diagnosis. Sometimes patients have to be a bit aggressive to get appropriate care. 

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  • Posted

    Hey everyone! I haven’t replied in a while because I’ve been so unwell and juggling uni alongside this is hard. So I have an update. As suggested, I had the blood test to check my amaylase etc and that was normal. And I also had the ultrasound. The results showed I have a polyp on my gallbladder, I don’t know whether this is the cause of my 10 year ordeal as I did have an ultrasound back in 2014 which was normal. My doctor didn’t really help much, I don’t think she knew much about gallbladder polyps and the symptoms. I did google polyps and from what I’ve read polyps are not really a nuisance for causing symptoms. So I’ve been referred to the surgical team as I literally begged for something to be done, so they may say I need my gallbladder removing. But I’m not sure whether this will resolve anything? 
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