Gastroparesis

@Trish Thank you! It is a huge relief! I hope my findings were correct, so it's something I can control

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For those still with gastroparesis, I forgot to say that one thing that helped me a little over the months was having the juice from a slice of lemon. I don't know why that is or if it'll help others.

 

Don't read this if you're easily disgusted.

A few years ago I had symptoms suggesting I might have gastroparesis, while also having diarrhoea. It turned out I had a large polyp in my colon that caused gastroparesis-type symptoms. The diarrhoea was caused by the "overflow" of faeces around the polyp. "Overflow diarrhoea" is quite a common problem and info can be found on the web quite easily..

https://www.mariecurie.org.uk/help/...age-symptoms/bowel-problems#overflowdiarrhoea

Once the polyp was found and removed the symptoms I had been suffering with gradually went away (it took a few weeks). I don't have very severe problems with diarrhoea or constipation any more. Any issue that does arise is dealt with by using over-the-counter remedies, or by just ignoring it until it goes away.

 

Copied post and subsequent ones moved

Yes it could.

Actually there's a gastroenterologist in Queensland that thinks gastroparesis is getting misdiagnosed in people that have POTS group, she has seen many of these patients and finds they actually have gastroptosis. Something that can only be seen if you have a standing up X ray of your stomach after a meal. The weight of the food stretches the stomach down and the food struggles to get out. Kind of similar to CCI but instead of stretchy ligaments in the neck it's stretchy ligaments around digestive organs. I wonder if this happens in ME patients, it would be significantly under diagnosed. So many of these issues rely on stand up imaging services, which are rarer.

 

I don't suppose she's published any case reports? I'd certainly like to see examples of the imaging findings and how she considers that those findings account for the cluster of symptoms that this group of patients commonly report.

As students of medical history may recall, "gastroptosis" was a diagnosis of some limited popularity in the late 19th and very early 20th century, first named Glenard's disease, until it fell out of favour as it was realised that normal anatomical variation was being unnecessarily pathologised.

 

The gold standard examination for diagnosing gastroparesis is the gastric emptying scintigraphy (GES), where pictures of the stomach while standing up are taken immediately after a test meal and every hour thereafter. Therefore, doesn’t a GES also allow for ruling gastroptosis either in or out?

Edit: curiously enough, this large Japanese study found that gastroptosis is associated with reduced dyspepsia: https://www.jstage.jst.go.jp/article/internalmedicine/50/7/50_7_667/_pdf

 

I don't know this area well enough to back this up and it's possible I misunderstood. I recall her saying that most she gets coming through have scans for laying down but should be standing to see the gastroptosis. She seemed very sceptical of a gastroparesis diagnosis alone.

Has anyone here had a GES?


Here is her recent talk:

https://www.youtube.com/watch?v=QsRy3Cf58as

Has a lot of very interesting information regarding gut issues beyond just gastroptosis. Not sure on the science.

 

Better I have a talk from her:

https://www.youtube.com/watch?v=QsRy3Cf58as

 

The gastroptosis has always been considered quackery and I doubt it has changed. The stomach does not 'fall down' because it is full of food. The abdomen is a bit like a bag full of wet fish - one being the stomach. The stomach does not fall down any more than any of the other bit any more than in a bag of fish because everything is the same density. Digestive organs move a bit on standing but as far as I know nobody has any evidence of that being a problem.

I had a quick look through the presentation video. It does not appear to contain any data and there is a lot of talk about association with POTS. It looks like the usual made up stuff from the hypermobility/POTS brigade.

 

Thanks. I've not yet listened to all of it but have listened to the first 5 minutes.

I was struck by her comment that "needless to say that if you have POTS and hypermobile EDS you've probably got 3 or 4 of these" [list of syndromes slide @ 3:40]. Even in patients with generalised hypermobility (which I understand the EDS-III patients generally do not have; they tend to have hypermobility in a more limited number of joints) there is no plausible physiological link to some of the conditions listed on that slide. Eagle syndrome, for instance, is an elongation of the temporal styloid process and I cannot see how that could be linked to hypermobility. I'd imagine also that elongated styloids and calcified stylohyoid ligaments mentioned in the slide would be common radiological findings in the general population.

The second comment that struck me as unusual was "as a rule of thumb I say if you've got a dominant symptom - headache - then look for the vascular compression syndrome nearby - you've probably got a thoracic outlet [syndrome]. . . if you've got a lot of fainting when you stand up you've got one of those that decrease the vascular return to your heart" [around 3:45-4:05]. That is unusual advice; headache disorders and vasovagal/neurocardiogenic syncope are very common in the general population and there is little point in chasing zebras unless you have some specific findings.

 

I don't think they are part of a brigade, they seem to be very much an isolated clinician that came across this organically, though I think they now have some sort of following. They are a gastroenterologist who has noticed that a number of hypermobile POTS patients do have this significant sagging upon standing GES.

Gastroptosis in POTS patients is just one small part of their job. Most of their work is helping others with gastroparesis.

They haven't published because they are time poor but it would be interesting to see the extent of data they have collected.

It could be that this isn't the big deal they make it out to be. It's interesting enough to consider though I think.

 

Yeah this is a clinician that works in a small clinic, they aren't an academic. They speak with a certainty that would not be common in academic presentation. Quite a number of absolutes I know to be questionable.

 

Yes, I had a gastric emptying scintigraphy done last year to diagnose my gastroparesis. The images are all taken while standing up and this is a requirement in the recommendations of nuclear medicine societies on conducting a GES. There was no mention of my stomach being in an abnormal position.

 

They are very much part of a brigade, even if that isn't the way things were presented. I have heard this story of clinicians, and yes gastroenterologists commonly get onto this bandwagon, discovering this associations between 'EDS', 'POTS', gastroptosis and goodness knows what for at least 15 years now. They all say exactly the same thing - how surprised to find this (i.e. exactly the same as all the others were so surprised to find). But it is just a meme that goes around private physician groups because it sells well, I am afraid. I worked with one of the people who started it all off in the 1970s.

The way you can tell it is just made up is that if you check all the slides in the talk there are no actual data - just lists of 'facts'. Real scientific medicine doesn't look bit like that. People have data with numbers and graphs and method slides and so on.

 

@Jonathan Edwards

Are you familiar with with neurogastroenterology, a subspecialty of gastroenterology overlapping with neurology, it focuses on the brain, spinal cord, and the peripheral nerve? It's a specialty that most people don't have access to.

 

They actually want an academic to work with them to compile their medical records and publish real data on the subject. I was curious but don't want to waste my time or my students time. If you had access to the data, would you think it's worth seeing if this is real or better off ignoring?

Do you have POTS or hEDS?

 

POTS.

 

I am aware that some physicians call themselves neurogastroenterologists.
Some of them may know what they are doing but a number of 'eminent' ones in London seem pretty fringe to me, with large private practices.

 

Real data don't come from retrospective compiling of medical records. And if this person is not an academic and not doing any serious research there isn't much reason to take their claims seriously. As I say, they are claims I have heard trotted out by physicians for years - but there are never any data. This isn't something this physician has picked up through their own clinical experience. It is something picked up on a fringe physician circuit that has regular sessions at international meetings alongside the real medicine.

I think I already know more than enough to say this should be ignored.

 

Thank you, that's very good to know.

It's real data in that they have many examples of patient X rays of this phenomenon.

We would have looked at the patient data from the gastroptosis group and compared to gastroparesis group within the records to see if symptoms or other associated data were able to signal a difference. Really just to see if you could characterise this subgroup. It's not ideal but it would have been a start.

No they are not academic and not doing serious research, they want to spend their time treating. They want a researcher to go through their records to help publish what they've found.

Ok that's good to know. I've mentioned this to a few clinicians, most were interested but there was a cardiologist who had doubts too.