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Severe abdominal pain/indigestion for nearly 4 years, difficulty eating & weight loss

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Monarch98
Monarch98

Hello everyone, and apologies in advance for the lengthy post.

I am a 23 year old male from the UK. I have been experiencing severe abdominal symptoms after eating, for nearly 4 years. I have extreme fullness/early satiety even when eating only a small amount (specifically, it feels like I have a heavy, solid mass like bricks in my stomach that is extremely uncomfortable), acid reflux and bad heartburn, nausea and bloating, loose stools and complete loss of appetite. I feel 'unwell' all of the time, similar to having a stomach virus. I also get bad migraines, often together with my stomach symptoms, however there are not particular ‘trigger foods’ for this and an elimination diet is extremely difficult because I stick to a very limited selection of ‘safe’ foods that I eat everyday that stop my symptoms becoming unbearable (though they do not help much). I am therefore unable to work or study. This has all enormously reduced my quality of life and made me feel very low mentally.

I have had many tests to try to reach a diagnosis but so far only Celiac disease was confirmed (in 2016) by endoscopy. However I am on a strict gluten free diet and had an endoscopy 1 year later since then confirming that the intestinal damage the Coeliac caused has fully healed, and that I currently have no signs of ongoing accidental gluten ingestion. It has been suggested that my problem is functional however no medications have helped. These include omeprazole, amitriptyline, mirtazapine, mebeverine for IBS-type symptoms and migraine medications. Other tests I have had which came back as normal/negative are:

Endoscopy (x3) [apart from the initial Coeliac diagnosis]

Gastric emptying study (x2)

Oesophageal manometry

24hr pH/impodence test (for reflux)

Barium meal

'Pill cam'/capsule endoscopy

Colonoscopy

CT scan of abdomen (x2)

Abdominal ultrasound

Hydrogen breath test for bacterial overgrowth (SIBO)

Vascular tests (abdominal)

MRI head

Until recently, I was on a nasojejunal (NJ) feeding tube to try to put on weight as it has dropped significantly due to not being able to eat much. However, my symptoms were worsened by that too, so it has now been removed. If anyone has any advice or experienced something similar and eventually got an answer it would be greatly appreciated as this has been completely devastating for me and my family. Additionally, the medical professionals seem to be giving up and are doing everything so slowly now - does anyone have any tips for speeding things up/making them take more urgent action? I’m in so much pain and my weight continues to drop rapidly due to having so little calories.

Thank you.

0 likes, 3 replies

3 Replies

  • pippa58442
    pippa58442 Monarch98

    Posted

    Mebeverine is not good for IBS/IBS type symptoms and anti depressants can also cause stomach upsets as well as other symptoms. I had to come off Mebeverine within four days because it made me worse. I tried Buscopan for my IBS and it worked for me. Over the counter painkillers have also helped my pain. Did your doctor specify your functional condition as IBS? My IBS started with constipation, constant, generalised abdominal pain, loose stools, nausea and a feeling I had a stomach bug and I had a horrible taste in my mouth.

    If nothing else has shown up, IBS may be a possibility. You can have celiac and IBS at the same time. Keep going back to your doctor and if necessary change your doctor to get a confirmed diagnosis of your problem. It took me three and a half months of seeing several doctors and have various tests before my IBS was identified. Instead of an elimination diet, try a food diary to pinpoint any problem foods. Pain after eating would suggest that a certain food(s) is the problem.

  • moon53540
    moon53540 Monarch98

    Posted

    Try alverine (For IBS), esomeprazole and deflatine. Also try and give up dairy, carbonated drinks and sugar for a bit (if you have them), see if it helps because they can bloat you really badly and give you diarrhea. Maybe get an MRI of your stomach if you haven't already had one. Get a copy of your results of the scans you have already had and give them to another radiologist to have a look at in case your one missed something. Some additives to coeliac bread and other coeliac products have additives which can really upset some people's stomachs. So avoid those products for a bit. You can get carbs from vegetables, rice, quinoa and legumes.

    • Monarch98
      Monarch98 moon53540

      Posted

      Thanks for the advice. I will discuss an abdominal MRI. One of my doctors mentioned that before but it was never organised.

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