What’s wrong with me, hospital clueless

My GP used a similar phase when my son had an unusual diagnosis “looks like we have found a zebra” he sounded almost excited.

I understand the comment. But I pity the patients who have doctors so afraid of admitting they don’t know what the problem is yet, that the doctors try say it’s in the patients head.

Dr Google can be helpful. “Hear hooves, think horses… but remember that zebras exist”.

The fact that OP has been having 'copious amounts of morphine', tramadol, codeine, etc., may contribute to low BP. This is why her medical team is best place to decide if it's concerning. Ultimately, if they were concerned, they'd do something about it.

I'm not sure it's helpful (generally) for people to decide that treatment is sub standard when they haven't got an accurate picture of the situation.

Sometimes it's really obvious that bad treatment is taking place ("I'm still covered in blood and vomit from last night, I can't walk to the toilet and nobody will bring me a bed pan") but this, I feel, is different. @elm26 is understandably concerned that she's experiencing pain and that the team aren't taking it seriously, but she's had lots of scans, presumably an exploratory laparotomy, and is being treated.

Agree if episodic but I'd read from OP that BP and sats were consistently low in earlier posts. I'll go back and re-read in case I've missed something you've picked up on that I haven't.

"High heart rate with pain is expected but the low BP/low sats are concerning.
Can you ask for medics review if no surgical causes found?"

It can be a reflex response to pain. The vagal nerve is triggered and causes the blood vessels to widen, which drops the BP. If someone isn't taking effective breaths (the OP describes screaming in pain - you can't breathe well if you're screaming) then that can cause sats to drop. I suspect that given the OP's description of nurses putting cool packs on her cheeks and chest, she was having a panic attack prompted by the sudden pain with unknown cause. Perfectly understandable, but probably not related to the cause of the pain directly. What I mean by that is that, for example, a stabbing would cause extreme pain and the BP/sats drop because of blood loss. This sounds more like a physiological response to pain because the observations returned to normal or near normal (it seems) once the episode had passed.

Normally they wouldn't get the TTG (coeliac test) back for a few weeks. Total IgA is measured with coeliac tests as if it is low, it can make a coeliac return falsely negative.

High heart rate with pain is expected but the low BP/low sats are concerning.
Can you ask for medics review if no surgical causes found?

Perhaps this is a case of 'to a hammer, every problem is a nail.'

This is not a differential list - I'm just writing this to show that there are many many other/medical causes of abdominal pain outside what a surgeon may consider.
E.g. lupus can cause raised IgA, angioedema (swelling symptoms) and lupus can also cause mesenteric ischaemia causing abdominal pain (but you'd likely have other symptoms of lupus if you had this).

Biliary dyskinesia/sphincter of oddi dysfunction (probably falls under surgeons)
Lead poisoning, malaria, peptic ulcer etc.

Have they excluded adrenal insufficiency?
Are they considering angioneurotic oedema with abdominal pain as a manifestation (this would be a diagnosis of exclusion)?

Dd has coeliac disease and was diagnosed as an inpatient quite quickly after becoming suddenly very unwell. She collapsed due to malnutrition though rather than collapsing in pain.

Are they talking about doing an endoscopy now? Dd had hers as an inpatient.

have to agree I don’t recognise the level of,pain you’re experiencing though. She felt sick, she was being sick, she struggled to eat and had bad stomach ache/cramps. I appreciate it could be different for others though.

He’s fully qualified but still uses Google, To be honest when I broke my arm I complained to him that it still hurt like hell after a year, he told me that can be normal. After 18 months of pain and taking painkillers constantly I visited my own Dr. He was quite dismissive but sent me for an X-ray for my peace of mind. Low and behold it was still broken 🤦‍♀️ . He called me the next day and apologised profusely. I’d been kicked by my daughters horse, ouchy 🥴

Smart! I had to have a colonoscopy when DD was a baby and didn't think of those, I ended up spreading out one of her nappies in my pants!

Yeah true, suppose it was low then. But still having severe episodes of pain and now high iga so further investigations are indicated.

Presumably, they have medical training as well

We have a Dr friend who himself uses Dr Google whilst at work 😳

Is there another hospital in the area you can transfer to? It doesn't sound like you are getting on with the gynae consultant there and if you are getting no joy then it's fresh eyes?

I've just read your post of 18.46 this evening and am horrified and appalled at your treatment. I'm so sorry that you're going through this.

TTG is an IgA antibody - the coeliac test that’s usually requested is TTG-IgA

IGA isn't specific to coeliac, it just indicates a level of inflammation/infection in the digestive tract or other mucous areas.

There is a more specific IGA TTG for coeliac but this isn't completely reliable. EMA is the most specific test for coeliac

Yep, I pity the doctors having to deal with patients who think they know more than them because their cousins hairdressers neighbour had similar symptoms and it turned out to be parvovirus

Iga is an immunoglobin that protects mucousy places. A very high iga can mean your body is fighting an infection in any of the places that involve mucous, so sinus, throat, lungs and gut. It can be raised with celiac, but also with Crohns, IBD or liver issues.

Everyone consults Dr Google these days! Not necessarily beneficially.

Given the swelling you’ve mentioned along with the severe abdominal attacks and the BP/heart rate drops, it might be worth asking whether something like mast cell activation syndrome (MCAS) or some form of angioedema has been considered. Those can cause episodic abdominal pain plus swelling and can be hard to pick up on standard scans and blood tests.

The IgA blood test can be back within 24 hours. If you read the post the medics have said the pain is not consistent with being caused by coeliac (hence them
not calling a gastroenterologist when she had a flare up) but the OP says she’s read it can cause the symptoms she’s experiencing.

Clearly there is much much more to this than is being shared on MN (and that’s fine).

The IGA test can be back in just a few days if you’re an inpatient.

I was thinking same, unlikely to be linked to coeliac, except where have come fully off gluten for a period of several months, and then ingested a lot of gluten.

OP I would query the coeliac diagnosis, that test usually takes around 2 weeks to come back due to the nature of the test and equipment only being in specific locations. We have to schedule my daughters blood tests 3 weeks before she sees her paediatrician to ensure he has results available, and even then there have been times where he still doesn't have it. I think you only had the blood test maybe 3 days ago? So possibly a mix up.

Agreed: they are missing something really important. Not for me to say what.