Undiagnosed for 3 years

Posted by nicoleny @nicoleny, Aug 23, 2018

Hello All… I am 35 years old and I suffer from chronic intermittent abdominal pain. I have seen over 20 doctors in 3 different states and have had the diagnosis of IBS, however, part of me can't help wonder if it is my pancreas that is evading diagnosis. This has been happening for 3 years now. I have had several hospital visits for pain, a gallbladder removal, several CT scans, liver biopsy, pancreatic function test, several ultrasounds, fecal fat tests, and all these tests have come back normal, my lipase or amalayse levels have never been elevated. I did have an EUS done on my pancreas, which showed 4 out of the 9 criteria for chronic pancreatitis. I then took those findings to a highly regarded pancreas specialist in Boston who had performed my pancreatic function test. He said based on the pancreatic function test coming back normal and only having 4 out of the 9 criteria for chronic pancreatitis, that he did not think it is my pancreas. My pain is typically situated in my left side below and under my rib cage. The pain tends to be intermittent, but I do get orange loose stools with it. I typically get mouth ulcers on and off and I get so tired during flare ups. Just seeing if anyone has any input/feedback as I feel I received the diagnosis of IBS because nothing else is showing up. Thank you.

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My problem comes and goes…I can go months with no problem then the symptoms will start. The Docs at Mayo Clinic call these episodes “spells”. When I have one of these "spells" I have nausea, discomfort on ride side under rib cage (not pain, just discomfort), weakness all over – especially in my legs – they feel rubbery/weak, I feel light headed/dizzy, and sometimes I have acid reflux and bloating. When these symptoms first started in 2013, my BP/Pulse rate would be very high during the episode. Even now when I’m having a spell my BP can be elevated, but I have medication now and have been told how to increase the BP medication if this happens. These spells have lasted for a few days – 4 months.

I had gall bladder surgery, and they checked my liver and pancreas – said everything looked good. I have had every test imaginable trying to determine what causes these episodes, and they can’t find a cause for my problem.

For me, it seems if I maintain a healthy weight, eat real food…stay away from processed food, minimize the sugar, gluten and dairy I can prevent the “spells”. When I first started having the problem I would reduce my food intake due to the nausea. Because I was eating less, and eating healthy I would lose weight and gradually the symptoms would go away. Throughout the last 5 ½ years I have noticed that if I start eating the wrong things and gain weight, I can have an episode.

About a week and half ago I started having the symptoms, but I “fell of the wagon” a while ago and was eating things I knew I shouldn’t, and gained weight. It had been over a year since I’d had a problem. I don’t know why I do this…after 5 ½ years of analyzing my situation I know better.

There is something called “Non-Alcoholic Fatty Liver”. My symptoms are comparable to what I have read on this condition, but there is no test I’ve had that shows I have this. According to what I have read, healthy weight and eating is the answer to controlling this condition. I look forward to hearing from others who have experienced similar health issues.

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Thanks for responding.


@oldkarl thank you again. I did have a liver biopsy 1 1 /2 years ago because all of my liver function blood tests were fine but I had an unexplained enlarged liver. When the did my biopsy it all came back normal.

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@nicoleny Just to reinforce. All Amyloidosis is progressive and, eventually, fatal. It may not reach the fatal level until age 90 or 140. But eventually it will take you if nothing else does. It just depends on how it starts and the pattern it holds, and how you block it. The enlarged liver means only that you should 1) have a liver biopsy, and do it again in another year, and 2) have the sFLC every year, and if it shows above the reference range for Kappa OR Lambda OR both, do the serious testing as soon as possible as noted in my paper or named by Mayo or other 1-AAA Clinic.

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