Lightlines,

I don't get how an ERCP can diagnose autoimmune pancreatitis. I think there are other non invasive ways to diagnose it. I would certainly "Google" it and do as much research as possibly.

And to your question as to the ERCP causing CP. It's a long answer, but in short, yes. Anytime they do any type of procedure that goes near the pancreas they run the risk of causing damage which can cause CP.

Get a second or third opinion before having an ERCP and check into how to diagnose autoimmune pancreatitis.

I think the reason for the ERCP is not to diagnose autoimmune but to eliminate other causes for your pancreatitis which makes no sense to me unless your pancreatitis is really bad.

I am not a doctor but I have done lots of research. This is only my opinion so please research it.

BTW, I would also ask them, if they find out it's AP how is it treated differently than CP. If the treatment is the same... why have the test?

Here is a link to the Mayo Clinic's site on autoimmune Pancreatitis:

http://www.mayoclinic.org/autoimmune-pancreatitis/

Hi,

Here is the treatment for autoimmune pancreatitis from the Mayo Clinic.
They treat it with steroids. So... I'm wondering, if they really think you have autoimmune why risk the ERCP and not just try the steroids?

Maybe I'm crazy, but it seems like it's worth a shot and much less risky.

Here's the link that I found from Mayo:

http://www.mayoclinic.org/autoimmune-pancreatitis/treatment.html

Hey, LightLines. I am not familiar with autoimmune p but am familiar with ERCP and yes it can cause pancreatitis especially considering what other procedures might be done while the ERCP is being preformed. It's important to note what ERCP means: endoscopic retrograde cholangiopancreatography, because it is based in the tography part. Once a doctor is in with the scope and injects dye, they can determine other possible hopefully beneficial treatments like sphincterotomy, stint placements, etc. that can be preformed while they are in. This is what caused me and many others pancreatitis, it wasn't neccessarily the ERCP itself. If you review the posts under "Sphincterotomy??? And an ERCP" you can read more about those things. Be sure your doctors really know what they are doing due to experience and not just because they don't want you to think they don't know. Your health is too important to subject to a doctor's ego and I have experienced the negative results of way too many "too big" egos. If I can be of any further help, please don't hesitate to send me a message. It may take a few days for me to respond but I will. Good luck and blessings to you!

I looked up autoimmune pancreatitis and found a link to the Mayo Clinic. I'm not sure an Internist should be making such a complicated diagnosis. Mayo Clinic involves many specialists to make that diagnosis. A quote from the follwing link, "At Mayo Clinic, an experienced team of specialists in pancreatic disease, including a gastroenterologist, endoscopist, pathologist and radiologist, evaluates patients for autoimmune pancreatitis."
http://www.mayoclinic.org/autoimmune-pancreatitis/
Hope that helps.

Hi guys, thanks for this link. I have been trying to load it but for some reason their server is acting up. I will try again tomorrow. I wish I could afford the Mayo Clinic, but I know I can't.

I have been doing research and the problem is there is such a range of opinions which is why I just don't know up from down anymore. A lot of places say ERCP is no big deal, and then you get the horror stories at the other extreme. Also I am allergic to iodine, so I doubt they can use any dyes. That might help my chances of no side effects; but then again maybe it will render the whole procedure a waste of time because they won't be able to see anything.

The internist does however feel we need to get to the bottom of this because my other organs might also be at risk. She seems to think that a biopsy is very important.

I am now wondering if I need to get a second opinion. More money, more time. I am going to mull it over some more. I just hope this Mayo website comes online.

And yes TS, I will definitely ask about just trying prednisone to see if that makes everything go away. But I suspect she will say no, as she wants to get to the root of what is wrong.


Thanks again both of you...this board has been a godsend to a newbie like me!!!

Hey TS! I really feel for you and the fact it seems there are more unknowns than knowns when dealing with gi stuff. I feel very fortunate to have good insurance through my wife's job and can only imagine how much more difficult it would be having to worry about paying for each new consultation and procedure. It seems to me you are doing all you can to make the best decisions and I wish you great wisdom and quick answers. The best of luck and please keep us informed of your progress. If you continue to have problems with the link, I suggest you just go straight to Mayo Clinic and look for appropriate topics that way. I'm pulling for you.

Thanks so much for your good wishes...I am still on the fence as to whether or not I am going to do it. I am leaving to see the internist in about an hour, and then I will decide. I have my list of questions!

This certainly is quite the thing, given I just thought I was a bit stressed and so had IBS. Oh well, time will tell I suppose!

Cheers and have a good day!

I was tested for autoimmune pancreatitis. They did this via bloodwork which from what I understand doesn't always show positive results even if you have it. Maybe this is why your doctor wants to take it a step further. I remember one of the blood tests was called an IGG4. Do you know if they tested you for this?

At least your doctor is being pro-active. My doctors are sticking to it's IBS and not looking any further even though my pancreas shows damage on an EUS test. If I were to ever have an ERCP I would only go to one of two doctors who I've heard were very good at this. One is Dr. Freeman at University of MN or Dr. Lehman in Indianapolis. If you're close to either one of these places I would look into seeing them. The more procedures a dr. has done the less likely it is that you will have problems.

A less invasive test to look at things is a MRCP with secretin. I don't think all hospitals offer this test. Another less invasive test is an Endoscopic Ultrasound (EUS). I don't remember if you've said you've had either one of these.

Good luck! I hope they discover what you're problem is.

Hello again!

I am back from the hospital...and they decided not to do an ERCP as the gastro guy there didn't feel it was warranted (even though my internist did...go figure!). They did a biopsy of my duodenum to see if I have celiac disease (even if I do it is irrelevant as I have been on a strict gluten-free diet for years) so IMHO a waste of my time and my money. Next is a 24 hour fecal fat test. Btw my IgG4 came back normal, but my overall IgG was low, as was my IgA, so it doesn't really point to autoimmune pancreatitis, although I read that in 25% of cases the IgG 4 is normal and they only way they can definitively tell is with a biopsy of my pancreas. This whole process is getting more and more frustrating. The only time I feel normal is when I have a low/no fat diet. I don't care what they diagnose me with, I just want to know what it is and start treating it. I am really starting to think that medicine is the most imprecise science out there.

Anyways at least I didn't end up with some awful pancreatitis attack as a result of doing a procedure that I probably didn't need, so for that I am thankful.

Thanks again for all of your thoughts and support!

Have a good day!

Glad you didn't need the ERCP. I was tested for autoimmune pancreatitis by blood test. I did have an ERCP, to cut the sphincter as also thought I might have SOD, it caused an acute attack and I spent 11 days in hospital. I don't think I'd ever agree to another one. It didn't help my pain so obviously didn't have SOD and I'm much worse since then.

Darbs,

I am very similar to you. They still don't know what causes my acute attacks but all my tests so far show nothing. I've had my gallbladder removed (it was fine when they took it out), I've had EUS, I've had 5 or 6 CAT scans and MRCP and except for a pseudocyst which is now gone, just some remnants of it are there.

In recent weeks I refused the ERCP with sphincterotomy and I received a letter from my G.I. doc stating that if I have another acute attack it could be fatal. Don't know if he was trying to cover his butt or if he was truly concerned or what. I just know that in 10-20% of acute pancreatitis and CP the cause is idiopathic so why would I take the risks?

Sigh.

TropicalSunsets - It seems to me that any attack could be fatal for anyone at anytime. Sounds like he's covering his butt. Maybe you should ask him or seek another opinion. I applaud you for standing up for yourself!!! It's inspiring! I hope you can find a doctor who shares your desire to be cautious. My cp cause was not idiopathic, rather a foreign object introduced endoscopically. :o(

I was also tested for autoimmune pancreatitis. The testing was done mostly though blood work, as other people have mentioned. Have you had an MRCP? My doctor did one of those first, and it gave us the answer. It was a long time in an MRI machine, but not invasive at all.

The treatment is a large dose of steroids for a while, and then a lower dose of steroids for a longer while. There seems to have been a lot of success with this treatment.

Hang in there, and good luck whatever the outcome...the unknown is the scariest part.

I just returned from my GI on Monday. He says he isn't ruling out auto immune panc. for me but isn't comfortable making that diagnosis without a biopsy to confirm. But, he says he isn't comfortable doing a biopsy at this point because they sometimes have to remove a large portion of the pancreas to do it. And, they already know from previous ERCP/MRCP's that there is a stricture in the pancreas that they would like to address first, so it sounds like the biopsy for auto immune is kind of a last resort. Also, he says simply treating it with prednisone to see if improves really wouldn't be beneficial to me because I don't have pain 24/7 and I could just be having a good week/month and they think it's the steroids when really the steroids have nothing to do with the improvement. Does that rambling make any sense? :) So, from what I gather, it must be somewhat difficult to diagnose it.

Yes, I have had an MRCP. And a CT scan, but they couldn't use a contrast dye because I am allergic to iodine so I suspect that doing it was a bit pointless. And an ultrasound. And tons of bloodwork. Nothing has shown up on ANY tests except I constantly have an amylase and a lipase at about double the top of the normal range and my AST is always low (huh?) and last time my rheumatoid factor was high (huh?). My IgG 4 was normal (in 75% of cases it is elevated in autoimmune pancreatitis). I was supposed to have an ERCP when I was in the hospital last week, but instead they did a duodenum biopsy to see if I have celiac disease. (Give me a break! - and even if I did, I am on a strict gluten-free diet and have been for about 10 years so who cares.) Now I have to do a 24 hour fecal fat test, except I can't manage to ingest 100g of fat per day. By the time I hit 50g, even if I spread it out, I feel like I am going to be sick, and then I can't eat anything. The ONLY thing that has made me feel ok (i.e. no nagging pain in right side under ribs, no nausea, nearly normal stools) is the 24 hour fast I had to do in the hospital, followed by a basically zero-fat diet (steamed rice and veggies - yum yum...NOT). I am not sure if just taking steroids is the way to go....my internist said that would be the next step if they found nothing in the ERCP biopsy. Except the biopsy didn't happen because the GI guy refused. The hospital wants me to see the GI guy now instead of the internist - the same one that refused to do the ERCP and thinks it might be Celiac disease. I suspect he will just be a waste of my time and my money, but I will go once to see what he has to say for himself. What they haven't done though is a HIDA, so maybe I will suggest that. Since after all, why would one think that a doctor has any brains, and instead it is up to us mere mortals to spend hours reading studies in PubMed (fun wow) and educate ourselves. Sorry, but I am getting a bit annoyed at this whole process, especially since I am the one who seems to have more insights than the doctors now.

Cheerio and have a good day. :-)