Thursday, February 16, 2012

Diagnosed with Idiopathic Pancreatitis?

If your diagnosis is idiopathic pancreatitis you may want to do some research in order to discover why you may have pancreatitis. Sometimes the only thing that is idiopathic is the diagnosis.

When I was finally diagnosed (after 14 doctors) both my doctor and I thought it may have been caused by trauma from a football injury but 2 years ago I was diagnosed with Celiac Disease. Now that sheds a whole new light on a possible reason I had so many recurrent acute pancreatitis episodes because ...

Celiac Disease is strongly associated with pancreatitis and autoimmune pancreatitis. The thing about autoimmune pancreatitis is that it is often misdiagnosed as pancreatic cancer due to raised levels of the same antibody, IgG4. And it can also look very similar on CT scans.

What I am getting at in a round-about-way is that your diagnosis of idiopathic pancreatitis main in fact actually be autoimmune pancreatitis or at the very least pancreatitis associated with an autoimmune disease such as Celiac Disease, Sjogren's Syndrome, Crohn's Disease, Ulcerative Colitus, Lupus, etc ... whether diagnosed or not.

So you may want to visit some of my Squidoo lenses:

Celiac Disease

Autoimmune Diseases Associated with Pancreatitis

And do some reading.

The lens that has info on autoimmune diseases that are associated with pancreatitis is NOT finished yet, in fact neither of the above are totally complete but the one on autoimmune disease and pancreatitis will be an ongoing effort because there are a lot of AID's to research!

Then you may wish to have your doctor test you for an appropriate autoimmune disease in order to discover the real reason you may have pancreatitis if you do not have a definitive diagnosis that points to alcohol or gallstones.

Just a thought.

4 comments:

  1. I've been juicing for a couple of weeks now. I did about 10 days of a fast and then added brown rice to my diet and oatmeal. I am still having some pain although wasn't on the juice fast but still juicing. Very frustrating. I cut the oatmeal out since that had a bit of fat it. Hoping that will help. Now have my menstrual cycle so having a bit more pain today.

    I am also doing the Karlovy healing mineral water and Dr. Peter Melamed thought maybe my juicing wasn't a good idea. I'm feeling very confused and overwhelmed. Maybe I should just go back to juicing but yet I don't know. I was having no pain but everytime I put food in the pain seems to come back.

    Still doing your supplements also. Do you think I need to avoid food longer?

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  2. Ok, what exactly were the findings at diagnosis of pancreatitis, in other words what kind of damage do you have and is the Sphincter of Oddi a problem, any cysts, pancreas divisum or calcification? Are you on pain meds?

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  3. I have had a MRCP which a duct had some dilatation and some beading but that was all that was seen. The pancreas otherwise looked great. I have had elevated levels twice in the hospital thus giving me my diagnosis. I have not had an ERCP and refuse to go down that road. I take Tramadol but very rarely. My pain has been much better since I started juicing. I don't have it constant but it is there a lot more than I would like. Activity is flaring it up also. I take your products, mineral healing water and as of now am juicing and try not to eat very much. If I do it is a small cup of brown rice, my own soup I made which includes potatoes, water, garlic, onions, very bland and vegetables so soft I can mash.

    I pray every day I wake up is better but so frustrated when I feel any pain. I am considering accupuncture, I don't know. Maybe no food again for a while. I don't know, I do know I can heal this and I'm just not willing to quit, I want to beat this, my life depends on it.

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  4. NEVER quit! Even when it is darkest at night you can often still see the stars! Anyway, I don't know what products I recommend that you are taking. Vit C, grape seed extract, curcumin and grapefruit juice. IF it were me, my abdomen was still tender and I was still having pain I would simply INCREASE my intake of ALL and see what happened. I may quit eating (most likely would) to for awhile again while increasing the amounts of vit C, grape seed, curcumin and grapefruit juice. BUT ...

    You said you had an MRCP which showed "beading." That may be why you are not healing up as fast as you should doing what I do. Quite frankly I am not sure whether this pancreatic duct beading will resolve with time of if it is a permanent damage problem however ...

    I am going to point you to links you should check out because "beading" can be be associated with some underlying factors such as an autoimmune disease and of course chronic pancreatitis.

    Open this link Beading and scroll down to "duct abnormalities" and you can see in fig 8 a picture of "chain-lakes beading in the pancreatic duct. You said you had a little beading, maybe not quite this involved but it gives you an idea as to why you may have pain for quite sometime. It may or may not be something that totally resolves.

    At this link Radiographics scroll down to "benign stricture" and read the whole section. You'll see the mention of Sclerosing cholangitis which refers to swelling (inflammation), scarring, and destruction ducts. This little problem can be asociated with autoimmune disorders and chronic pancreatitis. Here's more info on it Sclerosing cholangitis

    In any event, your healing may take more time than some so you'll need to be patient and increase the usage of the supplements until the pain resolves - in other words I'd keep increasing the amounts of vit C, grape seed and curcumin along with grapefruit juice consumption until my pain resolved. And frankly I don't know a lot about "beading." So I do not know if it is something that may resolve with the resolution of inflammation or not.

    I wish I could help more but there are many things I don't know a damn thing about :-)

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