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Mystery Pancreatitis

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martine389
martine389

I'm 27 years old. Was diagnosed with pancreatitis 8 months ago. My symptoms are upper abdominal pain that is constant. I had a temporary spike in blood lipase and amylase at the time of diagnosis that has since been within normal ranges. 1 ultrasound, 2 MRCPs (1 w/contrast), 2 CTs(1 w/contrast), an ERCP (had trouble retrograding dye through major papilla so was given sphincterotomy), and an endoscopy. Tested for celiac, IGF4 (autoimmune), and h pylori, with no abnormalities in any testing or blood work, other than the ERCP. Has been months since sphincterotomy with no improvement. Has anyone had a similar case that has been solved or know any other possible causes? I don't drink, smoke, triglycerides are normal, no gallstones or biliary abnormalities. Please, I need help. Thank you.

0 likes, 8 replies

8 Replies

  • cathy31644
    cathy31644 martine389

    Posted

    Hi,looks like you have had lots of good tests,scans,bloods etc.that must be reassuringly. I have no experience of spincterectomy but have had several episodes acute pancreatitis and almost constant pain for nearly two years,with only occasional raise in amlaise and lipids.I've had brilliant advice from folk on this sight and keeping to very low fat diet,below 5% fat in any 100gram ingrediance,no alcohol and plenty water really helps.I keep a diary and look at what helps and what doesn't.I hope my rambling help.
    • martine389
      martine389 cathy31644

      Posted

      That is extremely helpful. If you eat such low fat, what foods are you eating? What does a typical day look like as far as meals? And any leads on the cause? Thank you for replying.
  • cathy31644
    cathy31644 martine389

    Posted

    There's a lot of differing thoughtscon diet,some saying vegan is best and others that low fat is best.the pancreas produces enzymes that help digest food,so the thought is the less work the pancreas has to do the less pain.some folk take supplement ( on prescription) that helps break fat down and helps the pancreas to rest.but we can also do a lot ourselves.I can only say what help me,each person is different.

    I take oat milk in porage and fresh fruit for breakfast.

    Eat loads fruit.

    I make low fat soups and have low fat bread without butter or margfor dinner.

    Main meal is fish based or quorn,chicken,turkey or vegetarian.

    And no alcohol at all.no cake biscuits crisp cheese or chocolate,but low fat cottage cheese OK.also cut down on tea and coffee but have at least 2 litres fluid a day.lots of diet advice on net and have a look at vegan,the M.S ladies diet,pancreasititis diet,lots of blogs on net and some lovely recipes.I have managed to find low fat and fatless cake and treats as well.flapjacks is one if my favourite.I use/the symptom tracker from the IBS section on this site for my pancresitis tracking and symptom monitoring.this then shows me what I ate,how I was etc and I can make changes to try and keep myself as good as possible.hope this helps,happy to answer any questions

    • martine389
      martine389 cathy31644

      Posted

      Thank you very much.  It's so hard for me to go low fat, because I was healthy prior to getting pancreatitis as I lost 80 lbs eating a paleo type diet, with lower carbohydrates and moderate healthy fat.  Since I got diagnosed Ive gone into a slight depression though and been eating like crap.  I do take pancreatic enzymes.  Im sure low fat diet will help a lot though and i will give it a try.  I just wish I could find the cause or solution or both.  Thank you for your help
  • janet69451
    janet69451 martine389

    Posted

    You may never find out I'm in the same boat as you all test are normal other then the acute pancreatitis I had in October 2014 am on enzymes also but I am still struggling with symptoms but have been told by docotors it could take a year before I was better even though they don't know why Have found low fat diet plus no diary no chocolate no high acid foods have helped I know it sounds restrictive but it keeps the pain away for me and that is a plus. At least they found a small cause for yours my sphincter was also normal.

     

  • Dreamy82
    Dreamy82 martine389

    Posted

    Hi,

    I have similar symptoms. Pain under ribs after eating and back at night together with weight loss, however in my case it is even more mysterious since I never had an accute attack. All my results are normal (blood tests, ultrasound, CT with contrast, MRI, MRCP). Doctors say I have some kind of functional disorder, since they cannot explain my symptoms. I still have an EUS to do.

    What could be causing all of these symptoms? Me too I have been having digestive issues for 3 years, with IBS and food intolerances. I have been managing my symptoms with a lactose and gluten free diet...until now. I'm desperate for answers.

  • james30833
    james30833 martine389

    Posted

    Rice

    White chicken and turkey

    Beans

    Veggies

    Easy on the oil

    Low to no fat dressing

    Convenient food at a store is pretty much not an option

  • dana111
    dana111 martine389

    Posted

    I don't know if I'll get any replies as this post is several years old but thought I'd still give it a go. Got Abdominal Cat Scan results back today, following an elevated Lipase(423) level  blood test . I had the scan done , last Friday, and was given barium liquid to drink - I imagine to enhance the imaging since I am allergic to IV Contrast Dye. On Monday evening , so about three days later, I began getting severe chills, fever and a relentless headache . The next day it went on to become explosive diarrhea; the likes I've never experienced- this along with not being able to eat,drink or sleep; while being extremely fatigued and in pain . I have bad bouts of sweating profusely and literally has to wring my bed clothes out this morning, they were soping wet with perspiration. It was my first visit to this dr this morning and although I was desperate to learn of my Cat Scan results , I had to find out why I'm so sick and if it is at all related .Good news - no sign of pancreatic cancer or similar - bad news - he's not sure what's going on but wants me to change my diet as soon as I get to the point where I'm eating again. Problem is EVERYONE is telling me something else to do- he'd like me on a Vegan diet and to put ( at least a temporary hold)?on the supplements I've been using awhile eliminating any drugs I do not absolutely need. Nutritionist says animal protein is best! I have not had any meat or chicken in 30 years but recently realized I haven't been eating hardly ANY protein at all. Until this stomach bout, I had started a high protein low(er) fat diet. Is this the right suggestion ? What else can I do? I can't ever go through what these past few days have been . Finally - has anyone ever heard of this kind of a reaction to drinking barium ? I never got to ask the dr. Thanks for any help

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