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GI Hemmorhage

kangaSue

Senior Member
Messages
1,857
Location
Brisbane, Australia
At the time i had reduced appetite, feeling full after eating just a small amount, then immediately after eating my stomach would get very distended, and lots of nausea and feeling ill with it. I was losing weight also. Usually I am a big foodie and love to eat so this sudden change was troubling.
Have you had a Gastric Emptying Study done before, those symptoms sounds like Gastroparesis. Not everyone gets a very distended stomach with it but it does happen for some.

I have Gastroparesis and Chronic Mesenteric Ischemia which is a non-occlusive type so it's microvascular intestinal ischemia, hence my interest in the subject. My ischemia is well advanced so there was visible damage to the bowel mucosa during a colonoscopy but it's not Crohn's or UC.
Vascular Cell Adhesion Molecule 1 : 1.06 (High)
This one has me very interested. It's not a test I've had done but everything I read about intestinal ischemia suggests there is an increased amount of pro-inflammatory cell adhesion molecules and I've been looking to see whether or not anti-adhesion molecule therapy could help with my chronic GI dysfunction but getting absolutely no help from the GI specialists here in Australia.

Vasodilating nitrates were highly beneficial at relieving symptoms for a couple of years but things have started deteriorating again. I've been tested for Autoimmune Gastrointestinal Dysmotility but only had a finding of a "normal' titre of N-type voltage gated calcium channel antibody and one of the one's found in Myasthenia Gravis, the name of which eludes me at the moment.
http://www.mayoclinic.org/medical-p...ces/autoimmune-gi-dysmotility-a-new-direction

I don't think I've had the p-ANCA test done before, I'll have to check with my G.P.

This is the paper where I learned about intestinal ischemia;
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2778114/
 

TrixieStix

Senior Member
Messages
539
Have you had a Gastric Emptying Study done before, those symptoms sounds like Gastroparesis. Not everyone gets a very distended stomach with it but it does happen for some.

This one has me very interested. It's not a test I've had done but everything I read about intestinal ischemia suggests there is an increased amount of pro-inflammatory cell adhesion molecules and I've been looking to see whether or not anti-adhesion molecule therapy could help with my chronic GI dysfunction but getting absolutely no help from the GI specialists here in Australia.

I don't think I've had the p-ANCA test done before, I'll have to check with my G.P.

If you research the p-ANCA test it can be a bit confusing because the IBD spec. p-ANCA test is different than p-ANCA test for Vasculitis. I was really confused about this when I first started reading up on it. I had to look hard for info on the IBC spec. p-ANCA.

I'm still confused about the VCAM-1 thing...???? in a nutshell what does it mean if I have an elevated level of them?

I have had a gastric emptying study done and the results were normal. But my gastro doc admitted you can have some slowing and still have a normal test result. I've decided to ask my primary care doc to refer me back to a gastroenterologist so I can discuss those blood tests from 2 years ago having read that the IBD p-ANCA test can also be positive in "Type 1 autoimmune hepatitis" or "primary sclerosing cholangitis". Especially given that fatigue is a main symptom of both, along with joint and muscle pain in one of them ( i forget details). I have also been having episodes for some months now of sharp quite painful upper right quadrant pain (where my liver meet my bottom rib). And a recent ultrasound seemed to show that my liver may be a bit enlarged.

I'm proceeding with the ME/CFS diagnosis while still making sure I explore any other alternative diagnosis that could fit. I have somewhat of a complicated medical history for someone my age and have a propensity toward having uncommon or rare things. I was born with 2 extra ribs and a hereditary blood disease! I'm full of surprises. lol

From my early 20's until just a few years ago (mid 30's) I had pretty constant IBS symptoms separate from the other gastro symptoms I started having a few years ago. Had my first colonoscopy in my mid-20's. So the thought of maybe having UC or Crohns didn't seem too far fetched, but I am really thankful I do not. I've never head of the ischemia condition. I will check out those links.

I keep forgetting to mention though that in January 2015 I had surgery to remove one of my ovaries and they discovered I had severe Endometriosis. It had partially obliterated the cul-de-sac which is area of abdomen on the left along the colon. I had to have a 2nd much more extensive surgery 6 months later and it was discovered that the Endometriosis had infiltrated through my colon wall requiring a full-thickness bowel resection (removed a piece of the bowel wall not an entire section). So once I was diagnosed with Endometriosis it seemed like a good explanation for the IBS symptoms I had for so many years, pain with bowel movements, blood in my stool, fatigue, bladder issues, etc. Before these surgeries I had to begin taking an opiate medication for a different issue and it actually was a bit of a miracle cure and instead of you know what I now have constipation now. I will take that any day over the other end of the spectrum. So after the Endometriosis was discovered I stopped going to the Gastroenterologist. But our conversation has me wanting to investigate those abnormal labs some more.
 

kangaSue

Senior Member
Messages
1,857
Location
Brisbane, Australia
f you research the p-ANCA test it can be a bit confusing because the IBD spec. p-ANCA test is different than p-ANCA test for Vasculitis. I was really confused about this when I first started reading up on it. I had to look hard for info on the IBC spec. p-ANCA.
https://labtestsonline.org/understanding/analytes/anca/tab/test/ gives a reasonable analysis, I think.
I'm still confused about the VCAM-1 thing...???? in a nutshell what does it mean if I have an elevated level of them?
Can't say I'm an expert on the matter either. There's a whole bunch of different cell adhesion molecules that are part of the inflammatory response repair system but I gather there is elevated levels of them with the likes of chronic ischemia whether it be cardiac, intestinal, lung or any other sort ischemia when there is continual incidence of ischemia reperfusion injury. I think elevated ICAM and VCAM are responsible for increased vascular permeability.

Were you tested for other CAM's too or only VCAM-1? Were you given any reason why VCAM-1 was a target?
I have had a gastric emptying study done and the results were normal. But my gastro doc admitted you can have some slowing and still have a normal test result.
I was told by a highly respected GI surgeon that gastric emptying can vary by the hour, let alone from a day to day basis so a one off test is not a reliable indicator.

My first GES was just within the normal range, except no one told me to stop taking the motility agent I was on prior to the test. Re-tested 2 months later without medication showed a significantly delayed result.
I have also been having episodes for some months now of sharp quite painful upper right quadrant pain (where my liver meet my bottom rib).
Always hard to pin down a cause for these types of pain. I think you get a similar pain with hepatic ischemia from either Pancreatitis or Autoimmune Hepatitis. If the pain radiates to your right shoulder, it can be just a gallbladder thing.

Pain from Chronic Mesenteric Ischemia can be left sided, epigastric or right sided depending on which part of the intestine is affected by ischemia (can be anywhere from the duodenum to transverse colon) and is often mistaken for Pancreatitis. I don't think it's known for causing chronic fatigue though, it doesn't for me anyway.
I've never head of the ischemia condition. I will check out those links.
Seems it's rare for doctors to know about it too, in an outpatient population at least. I had a hell of a job trying to convince any of the specialists it was a possibility. In the end, my G.P. agreed to a trial of nitrates and low and behold, things improved dramatically. Paradoxically, vasodilators actually raised my low blood pressure too so there is something more amiss in my autonomic system other than GI dysfunction.
(https://www.ncbi.nlm.nih.gov/pubmed/19685450 The role of ischemia in IBD)
I had to have a 2nd much more extensive surgery 6 months later and it was discovered that the Endometriosis had infiltrated through my colon wall requiring a full-thickness bowel resection (removed a piece of the bowel wall not an entire section).
Adhesions is something that can never be excluded as a cause of pain after any sort of surgery. Endometriosis surgery has a bad habit of ending in adhesion problems. Bowel surgery can result in intestinal microvascular ischemia through a process called no reflow phenomenon, the best hypothesis I have seen for this is that dead cell debris from the elevated number of adhesion molecules as the result of ischemia/reperfusion injury from stopping the blood flow during surgery can clog the micro vessels.

It might pay to have an abdominal CT Angiogram done too if you haven't had one before just to make sure you don't one of the pelvic congestion syndromes causing the pain.

I didn't realize until recently that I also have Nutcracker Syndrome (in my case compression of the left renal artery by a massively enlarged ovarian vein) after accessing test results that were not previously made available to me when I didn't agree with the motility specialists opinion that there is nothing further they can do for me. This had been dismissed as being no connection to the motility issues but I discovered that I also have reduced angulation of the superior mesentery artery/aorta junction which can result in SMA (Superior Mesentery Artery) Syndrome (which can also cause intestinal ischemia) but the same thing also Nutcracker Syndrome and it's not uncommon to have the two conditions together.
 
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kangaSue

Senior Member
Messages
1,857
Location
Brisbane, Australia
@TrishaMafia
You got me interested enough to do a bit of digging to see if p-ANCA Ab commonly occurred with any sort of intestinal ischemia alone but any cases of positive p-ANCA seem to only happen in conjunction with having some form of vasculitis too. Vasculitis in itself can have fatigue as a symptom (how severe that may be I don't know) and blood and proteins in the urine are symptoms common to the majority of cases.
 

TrixieStix

Senior Member
Messages
539
@TrishaMafia
You got me interested enough to do a bit of digging to see if p-ANCA Ab commonly occurred with any sort of intestinal ischemia alone but any cases of positive p-ANCA seem to only happen in conjunction with having some form of vasculitis too. Vasculitis in itself can have fatigue as a symptom (how severe that may be I don't know) and blood and proteins in the urine are symptoms common to the majority of cases.

Yes that is a good explanation but it does not mention anything about p-ANCA being found in autoimmune hepatitis or Primary Sclerosing Cholangitis (scary disease!). Which seems strange given it's found in much higher #'s of ppl who have PSC and AIH than in Crohn's.

"ANCAs have also been reported in patients with chronic inflammatory disorders, such as UC (60%–80%), primary sclerosing cholangitis (88%), autoimmune hepatitis (81%), and to a lesser extent, CD (5%–25%)." http://clinchem.aaccjnls.org/content/52/2/171.full

I do not have a gallbladder so my upper RQ pain is not that. I am at risk of bile duct stones so there is always that possibility as well. In the past I've had very painful upper RQ episodes that sent me to the ER and they did an MRCP to look for bile duct stones, but none were found. Hopefully I will be getting a call from the Gastro doc any day to make my appt. Hoping if there is something to blame for the RQ pain that it's just a bile duct stone.

As for my pelvic pain, it is much much better since my Endometriosis surgery/total hysterectomy. So glad I found an actual skilled Endo specialist (there are only a handful of them in the world). It improved my bladder issues as well. The pain I have down on left may just be some scar tissue that gets sore due to pressure resulting from my very hard stool (medication side effect), that's my best guess. I hate taking Miralax but I should do so for a few weeks straight and see if softer stool makes that spot less painful. Easy experiement to do.

Let me know if you find out if you have had the p-ANCA test or if you end up getting it done!
 

kangaSue

Senior Member
Messages
1,857
Location
Brisbane, Australia
I do not have a gallbladder so my upper RQ pain is not that
Some 10-15% of people who've had their gallbladder removed continue to have similar or same symptoms that led them to having surgery in the first place, something called Post Cholecystectomy Syndrome (PCS).

Sphincter of Oddi dysfunction is another one to cause a similar pain where bile release is no longer being regulated but it manifests as diarrhea.
http://iffgd.org/upper-gi-disorders/sphincter-of-oddi-dysfunction.html
ANCAs have also been reported in patients with chronic inflammatory disorders
I meant to say that I was looking into ANCA antibodies in connection with "idiopathic" intestinal ischemia, either the likes of Chronic Mesenteric Ischemia or Ischemic Colitis, surprised that I found nothing in the literature seeing it occurs in other IBD's.
I hate taking Miralax but I should do so for a few weeks straight and see if softer stool makes that spot less painful. Easy experiement to do.
Magnesiun citrate and cayenne capsules together can be effective. I just use use Epsom Salts, Miralax strips out too much of the bowel flora with the active ingredient of polyethylene glycol, something that is a very efficient toilet bowel cleaner. Miralax is, or was, on an FDA watch list is a neuropsychiatric agent.
Let me know if you find out if you have had the p-ANCA test or if you end up getting it done!
I'm going to see if I can push my GI to get it done anyway. I'll definitely let you how it pans out.
 

kangaSue

Senior Member
Messages
1,857
Location
Brisbane, Australia
I'm still confused about the VCAM-1 thing...???? in a nutshell what does it mean if I have an elevated level of them?
@TrishaMafia VCAM-1 can be a marker for endothelial dysfunction which looks to be typically associated with having high cholesterol levels and atherosclerosis. Boosting nitric oxide is suggested as a measure to reduce the level of VCAM-1

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3561809/
[Using VCAM-1 expression as a marker of endothelial cell activation, we found that NO donors could inhibit cytokine-induced endothelial cell activation and monocyte adhesion under nonstatic conditions via inhibition of NF-κB (1). These findings indicated that exogenous NO could have therapeutic benefits in vascular inflammatory diseases, and subsequent studies have shown amelioration of atherosclerosis and other vascular diseases with NO donor therapy (6).
An important unresolved question at that time was whether endothelial dysfunction or endothelial cell activation was the primary initiator of atherogenesis. Endothelial cell activation by proinflammatory cytokines could clearly lead to endothelial dysfunction by inhibiting eNOS expression (7) and decreasing NO bioavailability through the induction of ROS (8). It was unclear how the endothelium was activated prior to the recruitment of inflammatory cells. A clue to this puzzle came from the seminal work of Li and colleagues, who showed that hypercholesterolemia brought on by an atherogenic diet could rapidly induce VCAM-1 expression in the rabbit endothelium (9). Additionally, hypercholesterolemia had previously been shown to produce endothelial dysfunction, in part, through inhibiting eNOS activity and/or NO bioavailability (10, 11).]
 

kangaSue

Senior Member
Messages
1,857
Location
Brisbane, Australia
Let me know if you find out if you have had the p-ANCA test or if you end up getting it done!
@TrishaMafia My G.P. ordered the ANCA test for me as I haven't had it done before. He cautioned me that this test is known to throw up a lot of false positives but he didn't expect to see a positive result for me as I don't have an elevated Sed Rate or C-Reactive Protein which is almost always the case in those with a positive ANCA Ab finding.

As was my G.P.'s expectation, my result came back negative.
 

TrixieStix

Senior Member
Messages
539
was it the IBD p-ANCA or was it the regular p-ANCA test for vasculitis?

I've actually never had an elevated CRP or SED.
 

kangaSue

Senior Member
Messages
1,857
Location
Brisbane, Australia
was it the IBD p-ANCA or was it the regular p-ANCA test for vasculitis?

I've actually never had an elevated CRP or SED.
I'm no expert here but as far as I can fathom, there is only the one ANCA test done. Staining pattern on IF substrate slides determines which of the four different variables it is when there is a positive result. If the result is p-ANCA pattern, then a separate ASCA test is run when CD or UC is being tested for to further determine which one it is.
 

TrixieStix

Senior Member
Messages
539
I'm no expert here but as far as I can fathom, there is only the one ANCA test done. Staining pattern on IF substrate slides determines which of the four different variables it is when there is a positive result. If the result is p-ANCA pattern, then a separate ASCA test is run when CD or UC is being tested for to further determine which one it is.
This is the panel I had done.

https://www.prometheuslabs.com/Resources/IBDDiagnostic/IBDsgi-ProductDetailDX13005-0113.pdf
 

TrixieStix

Senior Member
Messages
539
Ah, O.K. Reading the small print, that is a panel specific to only Prometheus which is obviously a far more involved than the basic offering here in Australia.
The rheumatologist I just saw retested my "p-ANCA" and it came back negative this time. However she had it done via a IFA test which is a different method than the ELISA (aka: EIA) method which is how my first test was done. I see a new gastroenterologist next week and will ask him about the difference. From what I've gathered online it is recommended that ANCA testing first be done using IFA and if positive it is repeated using ELISA method and that test must also be positive for it to be considered positive. Something like that.

I see a new gastroenterologist next week and will ask him about this.
 

kangaSue

Senior Member
Messages
1,857
Location
Brisbane, Australia
@TrixieStix

There was mention of other antibodies that can return a positive p-ANCA result in this article;
http://www.clevelandclinicmeded.com...ogy/laboratory-evaluation-rheumatic-diseases/
[The p-ANCA pattern indicates staining around the nucleus, and the antibody responsible for this pattern is usually against MPO. However, autoantibodies against elastase, cathepsin G, lactoferrin, lysozyme, and azurocidin have also been identified as causing the p-ANCA pattern.]
 

TrixieStix

Senior Member
Messages
539
@TrixieStix

There was mention of other antibodies that can return a positive p-ANCA result in this article;
http://www.clevelandclinicmeded.com...ogy/laboratory-evaluation-rheumatic-diseases/
[The p-ANCA pattern indicates staining around the nucleus, and the antibody responsible for this pattern is usually against MPO. However, autoantibodies against elastase, cathepsin G, lactoferrin, lysozyme, and azurocidin have also been identified as causing the p-ANCA pattern.]
yes they have found a number of diseases where positive p-ANCA is found. Overall it seems to be of very limited benefit in terms of diagnostic use. Can be a clue but not a lot of power in of itself.