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Celiac And Pancreatic Insufficiency


pathwaytohealing

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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


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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!


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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.

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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