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EXPERT for VERY complex gut complications needed desperatley

Messages
13
Hi all, wondering if anyone knows of a true expert for very complex and severe gut complications. even the books by many leaders in this stuff are not relevant for my puzzle and im looking for some practitioner who really truly knows their stuff, who i can contact .im in such an awful state health wise and my gut its terrible and I can't make any progress

im not new to this all and know all the usual treatments and suggestions and products etc , none of them are relevant

Can anyone point me in direction of a true expert in this stuff , im sick and tired of people who just take your money and actually dont really know all that much. im in a terrible position and my body cant take much more , i dont want to list all my symptoms and severity etc but ive been housebound for almost a decade and the combination of all this is a harrowing quality of life .

so id be really grateful for any practitioners suggestions , who is best placed to help etc. thanks !
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
Me, too... I'm slowly, continuously bleeding from ulcers in my gut. My GI doc says it's NSAID enteropathy but I've been off NSAIDs for 6 months now, and still I bleed. Will I have to have blood transfusions and iron infusions for the rest of my life?

Would love to know of a master GI doc with answers "outside of the box."
 
Messages
13
someone must know who is the leaders in the field of functional gut stuff . i wish to god i could not have to eat . stuck on a few foods and 99.9% supplements meds foods make me so ill .where ca nwe ask to find the leaders in the field?
 

Banana94

Senior Member
Messages
160
Location
Denmark
I dont know what kinda gut problems your suffering from, but KDM focuses really hard on treating SIBO in PWMECFS
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
Hi all, wondering if anyone knows of a true expert for very complex and severe gut complications
From the research papers into GI dysmotility, the two main players in the U.S.A. would be Dr Henry Parkman at Temple University School of Medicine in Philadelphia and Dr Michael Camilleri at Mayo Clinic, Rochester.

That said, I've heard of patients coming away from their appointments with either specialist underwhelmed with the whole experience and found them to be no better than any other GI motility specialist. There's a specialist category of Neurogastroenterologist in the U.S., that's who I would be going to see.

My opinion for what it's worth (as someone who's been searching for answers to complicated GI issues for 20 years now), there is no single expert medical "guru" you can turn to and patients end up being a greater resource to give you more valuable insight into it all via patient forums than what you can get from the best of the experts.

Put your symptoms out there, you never know where it will lead.
 

CCC

Senior Member
Messages
457
Can you tell us where you live?

The eastern side of Australia has two options that i know of: Barody in Sydney (Centre for Digestive Diseases) and another bloke in Melbourne. I would have to look up my old, old notes to find out who that is.

There was a raging debate over whose approach was better. They're both very expensive.

Can't help you if you are not in Australia, though.
 

Pink

Senior Member
Messages
574
Location
Tri state area
@kangaSue what's the difference between neurogastro vs regular gastro?
Any diff in tests or treatment?

I've seen a standard gastro so far and shes Ok but doesnt have much to offer aside from reglan or protonix.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
You might try Jason Hawrelak ND PhD, he's somewhere in Australia.

Have you been tested for mast cell activation syndrome or mast cell disease? Had a DNA stool test? Had a Genova Diagnostics NutrEval to look for nutrient deficiencies, especially amino acids like glutamine and glycine? Or looked into a fecal transplant?
 

outdamnspot

Senior Member
Messages
924
Can you tell us where you live?

The eastern side of Australia has two options that i know of: Barody in Sydney (Centre for Digestive Diseases) and another bloke in Melbourne. I would have to look up my old, old notes to find out who that is.

There was a raging debate over whose approach was better. They're both very expensive.

Can't help you if you are not in Australia, though.

I assume you're referring to Dr Paul Froom. I found him to be of no help
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
@kangaSue what's the difference between neurogastro vs regular gastro?
Any diff in tests or treatment?

I've seen a standard gastro so far and shes Ok but doesnt have much to offer aside from reglan or protonix.
At the very least, you need a GI specialising in motility disorders. Most regular GI's don't do the extra training for this side of things but it's second nature to Neurogastro's who also tend to have a greater understanding of the dysautonomia side of things and tend to do autonomic function testing as well as the regular GI function tests.

That said, I can't say I've benefitted greatly from seeing a GI motility specialist either and most things that have been tried or done for me are from suggestions that I have put forward in the first place.
 

Pink

Senior Member
Messages
574
Location
Tri state area
Well @kangaSue my gastro has discussed motility issues with me and we talked about doing a gastric emptying test but it's not covered by insurance
The gastro has treated me with the usual meds for gastroparesis but they haven't worked.
I'm not sure what more a neurogastro can offer.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
@Pink Talking about it is as far as some GI's go when what we need is autonomic function testing (a Heart Rate Variability to Deep Breathing is a good place to start), full thickness biopsies and a Smart Pill transit study in addition to a GES (Gastric Emptying Scintigraphy) study. A Doppler Ultrasound of the mesentery arteries to check for any vascular anomalies should be standard practice too when nothing else is panning out. By the way, have someone at least listen to your abdominal sounds for any evidence of a bruit.

Turned out that I had a bruit and eventually from that, did have evidence of a microvascular intestinal blood flow issue (chronic intestinal ischemia), but an ischemic problem was initially dismissed by doctors because there was no occlusive disease found to be affecting my mesentery arteries. Reading through the medical literature reveals that that can be the case in up to 30 % of cases of bowel ischemia.

Also from reading the medical literature, I can piece together that it's possible for autonomic dysfunction to cause a microvascular bowel blood flow deficiency (bowel ischemia) when vagus nerve dysfunction also affects cardiac output and regulation but doctors want it spelt out on a platter but it doesn't happen that way in the literature and I'm still banging my head against a brick wall in trying to get some doctors to see this connection. It can be tested for doing a Vasodilator Challenge Angiogram but good luck to you in trying to put that to a doctor because no one has ever proposed this before as a possible test for gastroparesis symptoms.

The usual meds for GP, well they fail, as usual, at a high rate in a good percentage of GP'ers and it has been no different for me however the unusual has helped in vasodilators, even though I have a low bp problem. I can't survive without nicorandil, thanks only to my regular Physician who is willing to consider trying things outside the box if I can show cause why.

It can get to be a very complicated picture. My bruit turns out to be caused by left renal vein compression, Nutcracker Syndrome (NCS, which was totally missed until I picked up on it from looking at my imaging pictures). NCS for reasons not fully elucidated causes autonomic dysfunction (POTS is the worst of it) and as I mentioned above, autonomic dysfunction can be a cause of microvascular ischemia and which in turn causes al lthe symptoms of gastroparesis.