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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.
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