Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone With Pancreas Problems?


ranger

Recommended Posts

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.