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Anyone With Pancreas Problems?


ranger

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ranger Enthusiast

When going through the testing for celiac, my doc informed me that I had chronic pancreatitus. I was pretty shocked. especially because I have no symtoms. He also said that I was full of gallstones and I had never had that before. But the pancreatitus thing is scary. Would you tell me your experiences with any thing pancreatic? Also would like to know if people with chrons can eat gluten. Thanks. I hope you all can help me.


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Ms. Skinny Chic Explorer
When going through the testing for celiac, my doc informed me that I had chronic pancreatitus. I was pretty shocked. especially because I have no symtoms. He also said that I was full of gallstones and I had never had that before. But the pancreatitus thing is scary. Would you tell me your experiences with any thing pancreatic? Also would like to know if people with chrons can eat gluten. Thanks. I hope you all can help me.

What were your symptoms???

greeneyes33 Newbie

Right before my diagnosis, I ended up in the ER with horrible stomach pain. After all my labs came back they gave me a diagnosis of pancreatitis because my amylase and liapase levels were elevated and my pain was in the upper part of my stomach where the pancreas is.

Long story short, I didn't have pancreatitis. I had an endoscopy to rule out an ulcer and ended up with a celiac diagnosis. I've since switched to a dr who knows his butt from a hole in the wall, and he told me that your pancreatic enzymes can elevate from biting your tongue. If you dont have pain, and you can still eat, I highly doubt that you have pancreatitis. It is very painful according to the dr.

My enzyme levels continued to be elevated for almost 6 months. I was scared about it, but the new dr was not concered at all. He kept saying..."you've had a ct scan, your pancreas is normal, dont worry about the #'s they will come down...." And guess what, I had more bloodwork done a few weeks ago and everything is normal. Including my celiac panel!!! So, I would bet to say that its all celiac related. Get thee to a new dr and continue eating gluten-free. I'm not sure about the gallstones, as I know I do not have any, but if they were seen on your tests, I would assume that they are there.

Good luck!

  • 7 months later...
k2626 Explorer

I am interested about this too. Just posted my experience but have had inflammed pancreas and a host of other issues. My pancreas issues have been going on since Feb, my dad died on pancreatic cancer--so it scares me a lot of course. I have had a ct mri eus all clear, though I know enough people where masses etc have been missed.

Can you share your pancreas story--and if it was celiac how you found out etc??

ranger Enthusiast
I am interested about this too. Just posted my experience but have had inflammed pancreas and a host of other issues. My pancreas issues have been going on since Feb, my dad died on pancreatic cancer--so it scares me a lot of course. I have had a ct mri eus all clear, though I know enough people where masses etc have been missed.

Can you share your pancreas story--and if it was celiac how you found out etc??

I had a bout with acute pancreatitus in the mid 80's. The pain was horrible - like nothing I'd ever experienced. I was in the hospital for 6 days, most of it a blur because of the need for potent painkillers. Then, it went as fast as it came. Fast forward to Oct. of 08. During my search to find out what was wrong with me, a series of tests were done, including a sonigram of my pancreas. On that test, it showed that I had some psuedocysts in my pancreas and a dilated duct. The nurse told me that was consistant with old injury from the origial pancreatitus, but the doc dx'd chronic pancreatitus. I eat 5 meals a day with no stomach issues and no pain. From what I've fead about this "illness" that's almost impossible. No wonder I have no faith in docs. But. I know how you feel -I will always have this nagging fear of developing cancer of the pancreas, and hope they find a cure. Good luck to both of us!

kalie Newbie
I had a bout with acute pancreatitus in the mid 80's. The pain was horrible - like nothing I'd ever experienced. I was in the hospital for 6 days, most of it a blur because of the need for potent painkillers. Then, it went as fast as it came. Fast forward to Oct. of 08. During my search to find out what was wrong with me, a series of tests were done, including a sonigram of my pancreas. On that test, it showed that I had some psuedocysts in my pancreas and a dilated duct. The nurse told me that was consistant with old injury from the origial pancreatitus, but the doc dx'd chronic pancreatitus. I eat 5 meals a day with no stomach issues and no pain. From what I've fead about this "illness" that's almost impossible. No wonder I have no faith in docs. But. I know how you feel -I will always have this nagging fear of developing cancer of the pancreas, and hope they find a cure. Good luck to both of us!

I have had pancreatitus 5x in the last 8 years I was in the hospital 4x with it. It is very painful and I had a strong pain killer. The only thing you can do is go on a liqued diet for about 4 days. They are not sure why I get it, I thing that it is because I don,t always follow the gluten free diet. and when you don't follow the diet your internal orgians get inflamed and that is where the pain comes from. I have some very good Dr's, I have found out that I do need to stay on the gluten free diet. I do feel a lot better. Kalie

debmidge Rising Star

I think that there is a connection between gallbaldder disease and pancreatitis. Perhaps Maycoclinic.com can shed some light.


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  • 1 month later...
summerboger Newbie

I wonder if there is anyone out there like me? If I have even a tiny bit of gluten my pancreas tightens up. I can feel it sometimes. I immediately have signs that I cannot the food; or it may be hours before I have symptoms. Basically I become one huge toxic farting machine. Thank God I know about drinking vegetable juices and taking coffee enemas. For the next week or so if I have even a little bit of sugar all the symptoms come back. I was wondering if I should find a pancreatic glandular to take or just some enzymes. I feel nauseous but I could only find information on pancreatitus as a severe problem associated with the pancreas and gluten intolerance but not a smaller degree of pancreas problems. Does anyone else notice pancreas problems that don't land you in the ER? If so, what to do about it?

  • 1 year later...
crzy lady Newbie

I just wanted to get my two cents in on this topic even though these are old posts. I was finally diagnosed with autoimmune pancreatitis after several months of high-low level chronic pain and many tests for cancer, etc. I have pancreatic inflammation that is being treated with prednisone (short term) to help reduce inflammation. Since this is such a rare condition and I knew that some foods I ate would make the panc hurt, which by the way means the panc is auto-digesting itself, I sought treatment with someone who was educated in food allergies/sensitivities. I knew through trial and error that too much sugar would cause pain and she discovered that I am very gluten sensitive. I do not have celiac disease. My GI doctor did blood and tissue tests that were both neg. After being gluten free for just a couple days the pain was all but gone and I feel so much better. I'm hoping when this round of prednisone is done and they MRI my panc the inflammation will be gone and I will be home free. Autoimmune pancreatitis is treatable/cureable if you know what's causing the problem.

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    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
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    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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