Help needed as Drs can’t find out what’s wrong with me. Is anyone else having similar symptoms

Hi everyone am getting nowhere with my Drs and for the last 5 years have been having severe stomach and groin pain, severe bloating and it’s sometimes after I have eaten a meal sometimes even after just drinking a glass of mineral water. Sometimes the pain goes into my chest and shoulders but mostly it’s in the stomach. I also have a lot of water retention in my stomach and some in my hands legs and feet. I have been for scans, have had ultrasounds and seen 3 different gastroenterologists. Had endoscopes and camera down my throat twice. It’s something I would never repeat. Each person tells me I am fine but I am clearly not. Have been diagnosed with gerd 9 years ago which I didn’t know until I got my medical records no one told me. now needing a biopsy at the hospital on Monday after being fast tracked for a hospital appointment after seeing a new lady dr. I have persistent bloating and stomach swelling and I have endometriosis, polyps, ovarian and gallbladder cysts and fibroids. Drs think I am making a fuss Am 53 and in the menapause. Have had 3 laparoscopic procedures and my last surgeon suggested another one no later than 10 years from the last one. That was 14 years ago. I am treated like a moron and a hypercondriac at my gps. I have taken photos of my stomach which goes from looking like I am 3 months pregnant to a full 9 months I have severe pain which is so bad I take to my bed and wait till the pain goes which can take hours to ease I have a bladder and bowel prolapse and am beginning to wonder if I have something so well hidden it’s not showing on a scan I do have irritable bowel and am very careful what I eat. my diet is extra healthy I don’t drink, smoke or take any medication except for my lupus medication which I am trialing. I am allergic to anything and everything and I can’t eat like a normal person. the Drs have fobbed me off and I am left to treat myself I have tried almost every alternative therapy in desperation some treatments have been successful others have made no difference at all. I am not a coeliac yet I react like one. I am lactose intolerant and have instant reactions to food ranging from rapid heart beat and itching. Medication makes me very unwell can’t take antibiotics or pain killlers. My partner is shocked how quickly I go from well to unwell in a matter of minutes. Plus I have hundreds of other strange symptoms which are either ignored or I am not believed. I have to be my own gp am constantly doing research and the Drs don’t like it that you have some insight to any of your symptoms they mostly want to be treated like gods. I am at my wits end and feel so unwell I am now having symptoms of Sjogrens. Have even thought about research on treatment abroad. Does anyone have any idea what causes my pains or any advice as to what I should do to get some answers. Thank you so much for any help advice or support cheers

[Lulutopical]

Hello Jeromicus888,

I'm sorry to hear that you have been so unwell. By any chance when you were tested for coeliac did you do the gene test? If not, I would recommend having it. I was told I wasn't coeliac despite having all the symptoms from the normal antibody test, but my wonderful gp did the gene test a decade later and it came back as positive. I now know mine is from my maternal line, passed on by my mother. I was already gluten free at that point so I didn't bother with the biopsy. I just call myself a coeliac and that's that. If you have the gene and the symptoms then I think it is best to be very strictly gluten free. I have had one doctor insist that I do the biopsy but I refuse to eat gluten again, so I said no. She was very huffy about it, but it is my body and I don't need a biopsy to tell me that gluten makes me ill.

Also, I recently had a gastric episode much like you are describing. I gained 7kgs within one week and swelled up enormously. I had bloods taken at the time and my complement levels C3 and C4 were very high. My understanding of this is that it means the episode was not related to lupus activity. My lymph nodes also were very raised on the rhs of my body. I had one at the base of my skull that was quite large and the gp confirmed it was an enlarged lymph node. I discussed the swelling with my Haematologist and he said it was fluid retention. I do not know what caused it though. My swelling has gone down now, but I am still having stomach pain when I eat and fairly immediate 'emptying'.

Regarding the rapid heart beat, could it be POTS? I developed POTS in my third trimester and my heart beat was 140bpm! I was sent for an immediate ECG, but all was fine except the tachycardia. What you are describing with your heartbeat sounds very familiar, and you know once you have one autoimmune disease, others seem to join in.

I hope you get some answers and I will be interested to see what others suggest.

Lulu.

[Hidden in reply to Lulutopical]

Thank you so much for your reply as I know now what I need to do and I will get the tests done. I am so sorry you have the symptoms because it’s sheer hell. Yes I didn’t think of looking at the gene test as I had never heard of it before. My dad could only eat one meal a day and was in agony after eating then it would calm down till the next meal and it would start all over again. My parents had most of the symptoms I now have. have a great day and thanks again for the support.

[Lulutopical]

Oh, and I'm not sure if it helps but this was the post I made regarding my similar episode... healthunlocked.com/lupusuk/......

[Gcart]

I have similar all sorts of pains bloating . , Gluton free has gone a long way to help . Refused test as I had already had much relief . Dont buy any products just eat as natural as poss. Bread is most missed , cant find any I can eat.

Would never go back . Good luck

[Hidden in reply to Gcart]

Thank you for your advice yes I will take your advice and look to my diet and am sure that will make a big difference.