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

Celiac And Pancreatic Insufficiency


pathwaytohealing

Recommended Posts

pathwaytohealing Newbie

Hello, Has anyone in the forum had trouble with your pancreas?

Four weeks ago I began having mild pain in my left side and back. When I began researching the cause of the pain, I found that the gall bladder hurts above the waist on the right, but the pain in the left is the pancreas.

When I asked my doctor if I had pancreatitis, she told me I was worrying about nothing because my symptoms were not acute...like no fever, no severe pain or vomiting.

It's the first time I've seen this doctor so I didn't push her to start testing...I agreed with her and left. Then, the next day I ate a high fat breakfast at our favorite restaurant and had pain for 2 days. Then I started looking for more sites. This is what I learned.

*Mild pain is called Pancreatic Insufficiency.

*It can be caused by the Celiac patient's inablilty to process food in the colon

*The symptoms are similar to Celiac: pale stool, abdominal discomfort, gas, bloating and bone pain

*The medical world hasn't researched it much...guess that's why my doctor is only aware of acute pancreatitits and not what leads up to it

*In addition to a low fat diet, and eating 6 small meals a day, there are supplements that can heal damaged tissues in the pancreas

So, I'm continuing my "Celiac Journey" with prayer that I will have the determination to remove fats (all my favorite things) from my diet and the grace to do it cheerfully. It could be worse!

I hope this info will help someone. My prayers are with you all.

Linda


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



Celiac.com Sponsor (A8-M):



Looking for answers Contributor

This is interesting, and I hope you find your answer. I don't know the extent of your symptoms, but I often have pain on my left that radiates to my back and it's caused from gastritis (inflammation of the stomach). It's terribly painful, and then my stomach is sensitive when I push on it. just another avenue to explore.

ravenwoodglass Mentor

I have had pancreatis brought on by a severe reaction to an antibiotic that it turns out I didn't even need. I used pancreatin for a few months afterwards and now all is well. It doesn't surprise me at all that celiac could also effect the pancreas and I had issues with it off and on for years before I was diagnosed.

georgie Enthusiast

After 3 years of being gluten-free - I still had symptoms. Dr put me onto pancreas enzymes and I have never felt better.

Roda Rising Star

I took creon for about three months and it helped significantly. I chose to do a drastic food elimination at the same time as the creon since the only other option was steroids. I opted out of the steriods and glad I did. I no longer need the creon now that I have corrected the malabsorption problem I was having from hidden gluten sneaking in my diet. I will be going soon for repeat blood work so I'm keeping my fingers crossed that my Igg gliadin antibodies are going down. I can tell I am better since I don't have the steatorrhea and constant diarrhea anymore.

Newgs Newbie

I too suffered from a pain on the left side of my body right under the rib cage that radiated down that side to my lower hip area. I could not figure out what it was, taking ibuprofen daily, etc. I went to my doctor, she recommended a sonogram, they did not find anything, I was concerned it was cancer. Also, I had tenderness if I touched the area directly under the rib cage. Diagnosed with gluten sensitivity in December, went gluten free the week before Christmas. The pain is completely gone. Had one incident where I ate gluten and it came back, so I assume it is related. Thank you for your post

Skylark Collaborator

What websites did you read? I've been curious about celiac and pancreatitis, because I had a friend with odd pancreas trouble. If you could share the links I'd really appreciate it!


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



Celiac.com Sponsor (A8-M):



SaraKat Contributor

I too suffered from a pain on the left side of my body right under the rib cage that radiated down that side to my lower hip area. I could not figure out what it was, taking ibuprofen daily, etc. I went to my doctor, she recommended a sonogram, they did not find anything, I was concerned it was cancer. Also, I had tenderness if I touched the area directly under the rib cage. Diagnosed with gluten sensitivity in December, went gluten free the week before Christmas. The pain is completely gone. Had one incident where I ate gluten and it came back, so I assume it is related. Thank you for your post

Wow, this is exactly my story. My pain comes and goes though, even being on gluten-free diet. I probably ingested something bad and didn't realize it.

Re the pancreas- if your pancreas levels are fine according to the blood test, that can be ruled out, right? I have wondered if my left side pain is pancreas related, but a blood test was normal and my CT Scan and ultrasound showed the pancreas normal.

  • 3 months later...
deezer Apprentice

After 3 years of being gluten-free - I still had symptoms. Dr put me onto pancreas enzymes and I have never felt better.

What type of enzymes are you taking?

deezer Apprentice
deezer Apprentice

Here's yet another related article: Open Original Shared Link

"evidence from a new study shows that around one third of these patients actually have a severe pancreatic exocrine insufficiency, which can be successfully managed by enzyme replacement therapy"

Melissaann829 Apprentice

I had pancreatitis twice before being diagnosed with gluten sensitivity. I ended up bed ridden in a hospital on a feeding tube! It sucked!

  • 2 years later...
Dr.Wawa Newbie

This is interesting, and I hope you find your answer. I don't know the extent of your symptoms, but I often have pain on my left that radiates to my back and it's caused from gastritis (inflammation of the stomach). It's terribly painful, and then my stomach is sensitive when I push on it. just another avenue to explore.

 

 

Hello, Has anyone in the forum had trouble with your pancreas?

Four weeks ago I began having mild pain in my left side and back. When I began researching the cause of the pain, I found that the gall bladder hurts above the waist on the right, but the pain in the left is the pancreas.

When I asked my doctor if I had pancreatitis, she told me I was worrying about nothing because my symptoms were not acute...like no fever, no severe pain or vomiting.

It's the first time I've seen this doctor so I didn't push her to start testing...I agreed with her and left. Then, the next day I ate a high fat breakfast at our favorite restaurant and had pain for 2 days. Then I started looking for more sites. This is what I learned.

*Mild pain is called Pancreatic Insufficiency.

*It can be caused by the Celiac patient's inablilty to process food in the colon

*The symptoms are similar to Celiac: pale stool, abdominal discomfort, gas, bloating and bone pain

*The medical world hasn't researched it much...guess that's why my doctor is only aware of acute pancreatitits and not what leads up to it

*In addition to a low fat diet, and eating 6 small meals a day, there are supplements that can heal damaged tissues in the pancreas

So, I'm continuing my "Celiac Journey" with prayer that I will have the determination to remove fats (all my favorite things) from my diet and the grace to do it cheerfully. It could be worse!

I hope this info will help someone. My prayers are with you all.

Linda

It is not clear to me that my reply is going to "patheaytohealing"'s post.

About 1/3 of people diagnosed with celiac disease have pancreatic insufficiency. Sometimes this is discovered at the time of diagnosis and sometimes later. In my case, I learned I was gluten-intolerant, stopped eating gluten, and immediately stopped having pain and diarrhea for the next six years. The diarrhea returned even though I was very careful to avoid all wheat and I also avoided ":gluten-free" processed foods and restaurants food in case they were not actually gluten-free (this is a frequent problem and fraudulent companies end up in court over it). 

 

I figured out the pancreatic insufficiency by reading "Clean Gut" by S. Junger and "Celiac Disease" by Peter Green (both M.D.'s). But Dr. Junger suggested taking two capsules of the usual pancreatic enzyme preparation, and this i WRONG. I read the textbook presentations on the subject of exocrine pancreatic insufficiency and learned the therapeutic dose of SIX TO EIGHT CAPSULES of pancreatic enzymes with each meal. This is emphasized in the textbook versions as apparently it is often misunderstood by patients. As soon as I started eating six capsules per meal, my diarrhea stopped that day. 

 

I personally suspect there is a lot of denial about this because it is scary. If one's pancreas is not working, this suggests pancreatitis. And pancreatitis suggests cancer of the pancreas. And this would NOT be treatable by your regular oncologists so you could either die or go to NYC (Nicholas Gonzalez, M. D.) or Houston (Burzynski Clinic) and your insurance would not be useable as far as I know. Although I have not found very exact predictions or other information about this, I do see numerous references to the fact that some patients (maybe about half of them) are able to stop the enzymes after between three and six months. 

 

Apparently it is not know what is going on with these lesions, but most theories are that the malabsorption which is caused by gluten intolerance leads to pancreatic malfunction due to its lack of necessary nutrient. If this is so, taking the enzymes stops the malabsorption which then allow the pancreas to heal up. 

 

I also found a web account of using some mineral salts from a Czech spa to cure pancreatitis. I got some and tried taking them (dissolved in water) but have also read that high-sulfur foods should be avoided with colitis....so I am saving the salts for a later date in order not to confuse myself about what is working.

 

If you find that the pancreatic enzymes improve your health (get rid of pain and diarrhea) and if you smoke, you must quit smoking is associated with pancreatitis and pancreatic cancer pretty strongly. this is unlike its politicized reputation and apparently this applies to cigar and pipe smoking as well as to cigarettes. Some writers say it also applies to the newer nicotine vaporizers but I don't think it is possible to get very good information about a topic like this when people have such strong feelings about it (e.g., second-hand smoke, etc.). 

 

Take this seriously because there is no treatment for cancer of the pancreas (other than with the physicians I mentioned above).

GottaSki Mentor

It is not clear to me that my reply is going to "patheaytohealing"'s post.

 

 

This member has not been active since two days after they posted this thread in 2011 and will likely not see your post.

 

Do you have source for the claim that 1/3 of folks with Celiac Disease have pancreatic insufficiency?

 

Thanks and welcome to celiac.com.

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. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,152
    • Most Online (within 30 mins)
      7,748

    denise.milillo
    Newest Member
    denise.milillo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.