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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Pancreatitis And Celiac Disease
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22 posts in this topic

I have been on the gluten free diet for almost 11 months now. I have seen improvements since going gluten-free but a lot of symptoms have not gone away. My continuing symptoms include; diarrhea, upper midline stomach pain (sometimes severe), nausea (I need to take gravol so I don't vomit), bloating, gas, low energy, and fatigue. I feel that some of these symptoms should be diseapearing since I have been on the diet for almost a year. My entire digestive system has now been explored by endoscopy and colonoscopy. I have celiac disease but I don't have crohn's/ulcerative colitis/stomach ulcers/or any other diseases of the gastro-intestinal tract. I have also been tested for 2x for thyroid and got a negative both times.

I have been doing some research and have came across pancreatitis as a probable cause for my continuing symptoms. Some symptoms of pancreatitis include; upper midline abdominal pain that may radiate to the back, nausea, vomiting, diarrhea, weight loss, abdominal swelling, symptoms of malabsorption, problems with digestion, just to name a few (a quick google search will tell you more).

http://www.healthscout.com/ency/68/195/mai...sofPancreatitis

I have found some evidence that pancretitis may be related to celiac:

"Celiac disease is known to be associated with either pancreatic insufficiency or liver disease, but association of all three diseases has not yet been described. We suggest that chronic pancreatitis be added to the list of idiopathic inflammatory pancreatitis of possible autoimmune origin, enabling to explain the pathophysiology of all three disorders with one hypothesis"

http://www.ncbi.nlm.nih.gov/entrez/query.f...st_uids=2625189

"Painless pancreatitis with extensive calcification and villous atrophy of the small intestine was observed in a nonalcoholic female patient."

http://www.ncbi.nlm.nih.gov/entrez/query.f...ist_uids=605891

I was wondering if anyone else has chronic pancreatitis or pancreatic insufficiency in addition to celiac disease? And I was wondering what your thoughts were?

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Great work here once again, Medaka. I'm going to get into part of this w/ my paper, but it is my thought your line of thinking here is closer than just about any of the other alternative theories available.

The concept behind the thought that a condition like or very similar to Pancreatitis cannot and should not be ignored. The correlations that are clearly at work between Celiac and Diabetes should make this very evident, in my opinion.

What causes Pancreatitis? Well, we know that alcoholism has been linked. We know that higher lipids can bring this on(Liver relation). We know that mumps (Other infections, too?) can trigger this. Reduced blood flow (Lupus, Raynaud's, etc) has been associated to the condition, so can gallstones. Of key interest to me is the acknowledgement that several of the diuretic and immunosupressive drugs can touch off Pancreatitis as well. I will touch on what I have found in this specific area in my summary, but do believe something of major relevance takes place when a beta blocker and a diuretic are given in combination.

This is just one of the many conditions that can be traced back to Celiac Sprue, unfortunately, but I do feel that if there are three conditions directly implementing Celiac in its very pathway, it is SLE, Pancreatitis, and PBC.

The frustrating variable always goes back to the type of incomplete theories we have available to study. Pancreatitis in and of itself is an incomplete theory. The liver obviously has its role with Pancreatitis in most cases, in other words. And than there is the possibility that Pancreatitis itself is nothing more than an end result of Celiac Sprue. Is it possible that Celiac Sprue causes Pancreatitis, rather than supporting the mindset that Pancreatitis may cause Celiac Sprue? Sure.

So, in the case of Pancreatitis, it seems to go back to the same theory that must be applied over and over again-Pancreatitis is merely the result of something else that has gone wrong with the system. Outside of the possibility for the presence of Gallstones, which could than cause Pancreatitis, leading to damage of the villi, it would appear that in all other cases Pancreatitis AND Celiac Sprue are one and of the same, and they are nothing more than the result of another imbalance of the system, that being stress caused by a toxin (Medication, systematic alcohols, heavy metals, food or airborne source) and the (potential) state of systematic PH imbalance these may bring. Damage to the liver or infection would appear to be the only other possibilities, w/ all of these conditions (Possibly) having their impact on the amino profile along the way.

I do believe that one "condition" that really needs to be looked at for a few of those that have had vaccines over the past few years is Gullain Barre's Syndrome, too. For anyone that refuses to believe that vaccination can have a great impact on the system if given to the "Wrong person," I would invite any of you to speak to anyone that has been afflicted with Gullian's Barre. You would find their personal stories comparable to many of the symptoms that a few of those here are going through.

http://www.guillain-barre.com/overview.html

The key issue to take away from this is the acknowledgement that guillain-barre's is an inflammatory condition (See Pancreatitis-all of these spin offs are inflammatory, essentially).

While this article does not address the concept, the Merck's manual and 90% of the other available literatures and doctors, for that matter, indicate the worst waive of Guillain's ever before seen was in 1976, an outbreak that was traced back to the flu vaccine given that year. Remember now, in the 70's that Mercury was pumped into those vaccines moreso than any other period we know of. Coincidentally, you will also find the symptoms of Guillain Barre's almost exclusively similar in nature to those documented, gov't sponsored sources having to do with Mercury toxicity in and of itself. Mercury is still being used in almost all of today's vaccines. This is just one of the many possibilities that may explain for the inflammatory process running rampent in today's culture, but it should come as relevance.

Finally, an "Endoscopy gone bad" is another known cause of Pancreatitis. If one fully believes they may have Pancreatitis, it may not hurt to get a 2nd opinion in the unlikely event that your current GI doc may have damaged your GI tract.

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That is very interesting, thanks for your input.

Pancreatitis may be my problem...

It seems to be the only thing that makes sense to me right now and the only thimg that explains of my continuing symptoms. I've been blaming some of my severe pain on gluten contamination, but I am so careful on eating gluten free that I am finding it very hard to believe that I am getting contaminated all the time. And I think that symtoms such as chronic diarrhea would have disseappeared after 11 months on the diet.

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Finally, an "Endoscopy gone bad" is another known cause of Pancreatitis. If one fully believes they may have Pancreatitis, it may not hurt to get a 2nd opinion in the unlikely event that your current GI doc may have damaged your GI tract.

I had this happen to me, my pancreas seemed to basically shut down after a horrible reaction to an endo. Even at celiacs worst I never saw totally undigested food in my stool like I did after that endo. If you have any links to research on this I would be very interested in seeing them. Mine resolved with the short term use of pancreatic enzymes.

To the original poster I did have a few very painful bouts with pancreatitis before celiac diagnosis but nothing like the effect after the endo.

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I have been on the gluten free diet for almost 11 months now. I have seen improvements since going gluten-free but a lot of symptoms have not gone away. My continuing symptoms include; diarrhea, upper midline stomach pain (sometimes severe), nausea (I need to take gravol so I don't vomit), bloating, gas, low energy, and fatigue. I feel that some of these symptoms should be diseapearing since I have been on the diet for almost a year. My entire digestive system has now been explored by endoscopy and colonoscopy. I have celiac disease but I don't have crohn's/ulcerative colitis/stomach ulcers/or any other diseases of the gastro-intestinal tract. I have also been tested for 2x for thyroid and got a negative both times.

I have been doing some research and have came across pancreatitis as a probable cause for my continuing symptoms. Some symptoms of pancreatitis include; upper midline abdominal pain that may radiate to the back, nausea, vomiting, diarrhea, weight loss, abdominal swelling, symptoms of malabsorption, problems with digestion, just to name a few (a quick google search will tell you more).

http://www.healthscout.com/ency/68/195/mai...sofPancreatitis

I have found some evidence that pancretitis may be related to celiac:

"Celiac disease is known to be associated with either pancreatic insufficiency or liver disease, but association of all three diseases has not yet been described. We suggest that chronic pancreatitis be added to the list of idiopathic inflammatory pancreatitis of possible autoimmune origin, enabling to explain the pathophysiology of all three disorders with one hypothesis"

http://www.ncbi.nlm.nih.gov/entrez/query.f...st_uids=2625189

"Painless pancreatitis with extensive calcification and villous atrophy of the small intestine was observed in a nonalcoholic female patient."

http://www.ncbi.nlm.nih.gov/entrez/query.f...ist_uids=605891

I was wondering if anyone else has chronic pancreatitis or pancreatic insufficiency in addition to celiac disease? And I was wondering what your thoughts were?

2 years ago, i was tested(blood) due tto similiar symptoms. My pancreatic enzyme(lipase I think) was elevated. It is the one which helps digest protein. I had the pain that radiated to the back. I had ultrasound done also, everything looked good. But now, after all that time and no relief i stumble onto gluten and celiac and been Gluten-Free fro 3 weeks and all those symptoms are gone unless I gluten myself. I feel like a new person. So, if there is a link, htats not good. Pancreatitis if not controlled is a death sentnence. The tissue dies and thus no more panreas.

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It seems that the gluten intolerance leads to mineral deficiencies such as magnesium. If you google that you will find all those symptons. Once these minerals are restored you should feel much better. Gluten intolerance and pancreatitis are linked. Good luck.

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I was told 3 years ago that I had pancreatic insufficiency caused by chronic pancreatitis as a direct result of celiac. If you google "exocrine pancreatic insufficiency celiac" you will get a lot of information. I was started on Pancrease MT 20 at that time and I've been fine since as long as I make sure to take the enzymes with every meal/large snack.

I hope you find some relief soon!

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2 years ago, i was tested(blood) due tto similiar symptoms. My pancreatic enzyme(lipase I think) was elevated. It is the one which helps digest protein. I had the pain that radiated to the back. I had ultrasound done also, everything looked good. But now, after all that time and no relief i stumble onto gluten and celiac and been Gluten-Free fro 3 weeks and all those symptoms are gone unless I gluten myself. I feel like a new person. So, if there is a link, htats not good. Pancreatitis if not controlled is a death sentnence. The tissue dies and thus no more panreas.

Did it take a full 3 weeks to get better? Did you try and go low-fat to try and heal the pancreas?

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I was told 3 years ago that I had pancreatic insufficiency caused by chronic pancreatitis as a direct result of celiac. If you google "exocrine pancreatic insufficiency celiac" you will get a lot of information. I was started on Pancrease MT 20 at that time and I've been fine since as long as I make sure to take the enzymes with every meal/large snack.

I hope you find some relief soon!

What were your symptoms like? I have a lot of pain in my upper left quadrant, left side and a bit in the back, but a CT scan showed no inflammation of the pancreas.

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What were your symptoms like? I have a lot of pain in my upper left quadrant, left side and a bit in the back, but a CT scan showed no inflammation of the pancreas.

Honestly I didn't realize I had been in pain until the pain was gone. I was sent back to GI because I kept ending up in the ER with heart issues/muscle cramps due to chronically low potassium/magnesium levels. They did an EGD and found that my intestines looked good but I had atrophic gastritis caused by B12 deficiency and malnutrition. Rather then do a bunch of nasty tests they did the most telling test possible. They started me on the enzymes and said I would feel better in a week if that was the issue. It took 2 weeks but WOW! HUGE difference, I had energy, a lot of the brain fog went away and the only time I've had problems with the mag/pot levels is if I haven't taken the Pancrease for a couple days (like went out of town and forgot to pack them)

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A friend of mine has been in the hospital on and off for months due to pancreatitis, and they have finally linked it to a low functioning gallbladder and are taking it out now. I hope that she feels better. She has been on an IV bag for months now, unable to eat anything.

It could be your gallbladder irritating the pancreas.

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Honestly I didn't realize I had been in pain until the pain was gone. I was sent back to GI because I kept ending up in the ER with heart issues/muscle cramps due to chronically low potassium/magnesium levels. They did an EGD and found that my intestines looked good but I had atrophic gastritis caused by B12 deficiency and malnutrition. Rather then do a bunch of nasty tests they did the most telling test possible. They started me on the enzymes and said I would feel better in a week if that was the issue. It took 2 weeks but WOW! HUGE difference, I had energy, a lot of the brain fog went away and the only time I've had problems with the mag/pot levels is if I haven't taken the Pancrease for a couple days (like went out of town and forgot to pack them)

BlueTaelon & others, Do you know what types and levels of enzymes you were taking? I am interested in pursuing this therapy.

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I have been on the gluten free diet for almost 11 months now. I have seen improvements since going gluten-free but a lot of symptoms have not gone away. My continuing symptoms include; diarrhea, upper midline stomach pain (sometimes severe), nausea (I need to take gravol so I don't vomit), bloating, gas, low energy, and fatigue. I feel that some of these symptoms should be diseapearing since I have been on the diet for almost a year. My entire digestive system has now been explored by endoscopy and colonoscopy. I have celiac disease but I don't have crohn's/ulcerative colitis/stomach ulcers/or any other diseases of the gastro-intestinal tract. I have also been tested for 2x for thyroid and got a negative both times.

I have been doing some research and have came across pancreatitis as a probable cause for my continuing symptoms. Some symptoms of pancreatitis include; upper midline abdominal pain that may radiate to the back, nausea, vomiting, diarrhea, weight loss, abdominal swelling, symptoms of malabsorption, problems with digestion, just to name a few (a quick google search will tell you more).

http://www.healthscout.com/ency/68/195/mai...sofPancreatitis

I have found some evidence that pancretitis may be related to celiac:

"Celiac disease is known to be associated with either pancreatic insufficiency or liver disease, but association of all three diseases has not yet been described. We suggest that chronic pancreatitis be added to the list of idiopathic inflammatory pancreatitis of possible autoimmune origin, enabling to explain the pathophysiology of all three disorders with one hypothesis"

http://www.ncbi.nlm.nih.gov/entrez/query.f...st_uids=2625189

"Painless pancreatitis with extensive calcification and villous atrophy of the small intestine was observed in a nonalcoholic female patient."

http://www.ncbi.nlm.nih.gov/entrez/query.f...ist_uids=605891

I was wondering if anyone else has chronic pancreatitis or pancreatic insufficiency in addition to celiac disease? And I was wondering what your thoughts were?

i have been celiac for 8 years now....but for the past 1-2 years i have been having stomach/bowel problems. blood work looks good, so it seems it is not because of me ingesting gluten. dr. thinks it is a pancreatic insufficiency, put me on creon. it seemed to have helped some, but not completely. i think i have colitis, but not sure without dr. diagnosis. you can have pancreatic issues with celiac disease. i would talk to your dr. about it....maybe some medication (creon is an enzyme) may help. i guess i need to call my dr. to see what the next step for me is since the creon is not working as well as it did before.

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I was wondering if anyone else has chronic pancreatitis or pancreatic insufficiency in addition to celiac disease? And I was wondering what your thoughts were?

I actually found the link to this forum while looking for a link between pancreatitis and celiacs. Like you, I have never been a drinker (2 mixed drinks a year is my average), so I went looking for any link to gluten sensitivity.

I have had ongoing stomach problems for about 2 years. When I first went off gluten, things got better for about 3-4 months, then returned after a stresor. And since I'd done the scopes/xrays/blood tests at the regular doctor, and all they could tell me is that my gut was inflamed, I decided upon a Naturalpath in our area.

He did one test, and found the pancreatitis. I hope it's okay to provide a link to him, because he does do this test (stool/saliva) for out of state patients. Ran about $350 and covered a lot of stuff. I'd recommend it to anyone who can't get answers out of a regular doctor.

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Wow I am glad I came across this-here is a bit about me.

35 yr old female, 4 yrs ago was dxd with GERD-lots of burning, could not be controlled. 2 yrs ago I started to have neuropathy-muscle twitching all over, stabbing/burning migratory joint pains, have had livdo reticularous rash from being in sun, other odd things like bumps on head. 1 1/2 yrs ago started to get upper left quad pains-sharp jabs/squeezes that would come and go. Turns out my lipase was doubled and remained slightly elevated (have not checked since). My drs did the following tests as my dad died of pan cancer so that had to be ruled out. I had a CT, MRI, MRCP, EUS another EUS 6 months later-all 100% clear. I have had colonoscopys and regular endoscopes (not the EUS that looks at the pancreas)-no stomach issues, no biopsy was done though

I have had many labs and my celiac came back fine. I cannot help to think this is all related-the neuropathy, pancreas etc... Here I am again with pancreas pains.

Also, I developed horizontal ridges and lines on all toes and nails, have had them for 2 yrs now.

Feedback appreciated!

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I would offer yet another explanation or possibility for the link between celiac/gluten intolerance and pancreatitis, which is sphincter of Oddi dysfunction (SOO). Two years ago, my gastroenterologist suddenly had three celiacs with sphincter of Oddi dysfunction - me being one of them. The symptoms are elevated liver and/or pancreatic enzymes, pain, nausea, vomiting, etc. SOO is rather complicated and divided into three different types. One type includes pain, but without the elevated enzyme levels. I was fortunate enough to be one who had the elevated enzyme levels, so a "special" specialist in gastroenterology performed and ERCP and a sphincterotomy with stents. (Those without elevated enzyme levels usually don't have an ERCP as the procedure is very dangerous and it's feared the ERCP might cause injury to the pancreas/liver - thus their pain is not readily treated effectively). Untreated SOO can lead to pancreatitis or occur in conjunction.

I'm researching the association between celiac and pancreatitis; I didn't see a mention of sphincter of Oddi dysfunction and thought I would drop a note in case anyone is interested.

Cheers ~~Allie

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I have been on the gluten free diet for almost 11 months now. I have seen improvements since going gluten-free but a lot of symptoms have not gone away. My continuing symptoms include; diarrhea, upper midline stomach pain (sometimes severe), nausea (I need to take gravol so I don't vomit), bloating, gas, low energy, and fatigue. I feel that some of these symptoms should be diseapearing since I have been on the diet for almost a year. My entire digestive system has now been explored by endoscopy and colonoscopy. I have celiac disease but I don't have crohn's/ulcerative colitis/stomach ulcers/or any other diseases of the gastro-intestinal tract. I have also been tested for 2x for thyroid and got a negative both times.

I have been doing some research and have came across pancreatitis as a probable cause for my continuing symptoms. Some symptoms of pancreatitis include; upper midline abdominal pain that may radiate to the back, nausea, vomiting, diarrhea, weight loss, abdominal swelling, symptoms of malabsorption, problems with digestion, just to name a few (a quick google search will tell you more).

http://www.healthscout.com/ency/68/195/mai...sofPancreatitis

I have found some evidence that pancretitis may be related to celiac:

"Celiac disease is known to be associated with either pancreatic insufficiency or liver disease, but association of all three diseases has not yet been described. We suggest that chronic pancreatitis be added to the list of idiopathic inflammatory pancreatitis of possible autoimmune origin, enabling to explain the pathophysiology of all three disorders with one hypothesis"

http://www.ncbi.nlm.nih.gov/entrez/query.f...st_uids=2625189

"Painless pancreatitis with extensive calcification and villous atrophy of the small intestine was observed in a nonalcoholic female patient."

http://www.ncbi.nlm.nih.gov/entrez/query.f...ist_uids=605891

I was wondering if anyone else has chronic pancreatitis or pancreatic insufficiency in addition to celiac disease? And I was wondering what your thoughts were?

hi- i have this also. i have chronic pancreatitis owed to being dx with celiac sprue at aged 54 recently, which by the way, my mother had dx at aged 65, but probably had all her life, as i remember her suffering from ibs constantly etc, then being dx with severe osteoporis secondary to sprue, we are askenazi jews also which seem to have this as a higher percentage in the pop too. having said that, i also have sjogrens which also attacks the pancreas. i went in for a ct scan in april which showed half my pancreatic heaad is gone and atrophied. i am lucky right now not to be diabetic. the pain from pancratitis is very bad. i have gone to the er several times for it. i lost 50 pounds this past year without even knowing why until iwas dx with sprue. since then i changed my diet which has only been a couple of weeks and noticed i do not blow my nose anymore after eating which i didnt eve n know i had food allergys to wheat but now i see how blowing my nose for 15 min after eating foods which were wheat made and then having to blow my nose for 15 min afterwards, i see the conneection now. but iam hit with two auto immunes now which is very hard on me. i am just glad for me it came at aged 54 and not sooner ,most of my life is over so at least i had a decent quality of life when younger. i have advised my son who is 25 who has low thyriod to get himself checked for celiac sprue and to bascially take on a wheat free diet as much as possible even though he may not be postive for it b/c 5 yrs ago i was neg also but think i was silent. he has to take vit b shots and i tell him better adapt a wheat free diet it is just a healthy lifestyle anyways people ought to do. i had a severe attack of pancreatitis come on 2 days after i ate at mcdonalds, that for me was the clincher. this society is making people sick with all its refined foods and such. 50 yrs ago maybe the foods were not as bad. now everywhere you look is nothing but junk food places to eat. i can not eat out. there are no places for celiacs to eat out at, that is ok i guess. my time for eating out is now over.

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hi- i have this also. i have chronic pancreatitis owed to being dx with celiac sprue at aged 54 recently, which by the way, my mother had dx at aged 65, but probably had all her life, as i remember her suffering from ibs constantly etc, then being dx with severe osteoporis secondary to sprue, we are askenazi jews also which seem to have this as a higher percentage in the pop too. having said that, i also have sjogrens which also attacks the pancreas. i went in for a ct scan in april which showed half my pancreatic heaad is gone and atrophied. i am lucky right now not to be diabetic. the pain from pancratitis is very bad. i have gone to the er several times for it. i lost 50 pounds this past year without even knowing why until iwas dx with sprue. since then i changed my diet which has only been a couple of weeks and noticed i do not blow my nose anymore after eating which i didnt eve n know i had food allergys to wheat but now i see how blowing my nose for 15 min after eating foods which were wheat made and then having to blow my nose for 15 min afterwards, i see the conneection now. but iam hit with two auto immunes now which is very hard on me. i am just glad for me it came at aged 54 and not sooner ,most of my life is over so at least i had a decent quality of life when younger. i have advised my son who is 25 who has low thyriod to get himself checked for celiac sprue and to bascially take on a wheat free diet as much as possible even though he may not be postive for it b/c 5 yrs ago i was neg also but think i was silent. he has to take vit b shots and i tell him better adapt a wheat free diet it is just a healthy lifestyle anyways people ought to do. i had a severe attack of pancreatitis come on 2 days after i ate at mcdonalds, that for me was the clincher. this society is making people sick with all its refined foods and such. 50 yrs ago maybe the foods were not as bad. now everywhere you look is nothing but junk food places to eat. i can not eat out. there are no places for celiacs to eat out at, that is ok i guess. my time for eating out is now over.

I am 53 and have been gluten free since the early 1990s.. and have had attacks of pancreatitis twice, 20yrs apart... I have had a slight pain in that region occasionally and it seems to be associated with two things. One is elevated blood cholesterol that seems to happen when I take natural hormone replacement... I've read in other forums where this is also a problem with some forms of birth control. Secondly, I get symptoms when I ingest significant amounts of gluten over time. I found that doctors want to give antibiotics, do surgery of some kind or do nothing. So I take care of it myself using info from all over the internet. I eat very little and go for almost no fats, sugars, or simple carbs. I eat almost entirely fresh fruit and veggies in soft forms. I make a pot of veggies cooked well in a little water and pureed in blender and strained through large strainer...eating this with a slice now and then of home made gluten-free bread. This rests the pancreas and lets it heal itself. Then I research herbs and vitamins that help heal and reduce inflammation and use those. Sometimes I take an ibuprofen if I get a head ache with it. LOTS of water constantly, and lots of rest. In both severe cases, after I started doing this, the pancreas responded within a day or two and symptoms were gone. I continue being careful of diet and water consumption. But twenty years between attacks is a good record of success.

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hi. this is totally late but i too have celiac and sod. there are more of us out here than i realized. they think i have had sod since around 12 and just recently dx with celiac since my pregnancy. i suffer from much pain with these attacks i get in my upper tummy behind the stenum. i end up in the er with the pain being unbearable . i was just wondering if anyone else goes thru this type of pain and what do they do?

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I actually found the link to this forum while looking for a link between pancreatitis and celiacs. Like you, I have never been a drinker (2 mixed drinks a year is my average), so I went looking for any link to gluten sensitivity.

I have had ongoing stomach problems for about 2 years. When I first went off gluten, things got better for about 3-4 months, then returned after a stresor. And since I'd done the scopes/xrays/blood tests at the regular doctor, and all they could tell me is that my gut was inflamed, I decided upon a Naturalpath in our area.

He did one test, and found the pancreatitis. I hope it's okay to provide a link to him, because he does do this test (stool/saliva) for out of state patients. Ran about $350 and covered a lot of stuff. I'd recommend it to anyone who can't get answers out of a regular doctor.

Once you found out you had pancreatitis, what did you do to help it?

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Wow I am glad I came across this-here is a bit about me.

35 yr old female, 4 yrs ago was dxd with GERD-lots of burning, could not be controlled. 2 yrs ago I started to have neuropathy-muscle twitching all over, stabbing/burning migratory joint pains, have had livdo reticularous rash from being in sun, other odd things like bumps on head. 1 1/2 yrs ago started to get upper left quad pains-sharp jabs/squeezes that would come and go. Turns out my lipase was doubled and remained slightly elevated (have not checked since). My drs did the following tests as my dad died of pan cancer so that had to be ruled out. I had a CT, MRI, MRCP, EUS another EUS 6 months later-all 100% clear. I have had colonoscopys and regular endoscopes (not the EUS that looks at the pancreas)-no stomach issues, no biopsy was done though

I have had many labs and my celiac came back fine. I cannot help to think this is all related-the neuropathy, pancreas etc... Here I am again with pancreas pains.

Also, I developed horizontal ridges and lines on all toes and nails, have had them for 2 yrs now.

Feedback appreciated!

Did you ever have your Faecal pancreatic elastase-1 tested?

I ALSO have the horizontal ridges on my nails - and the same types of pain, but like you - no answers. I think I am going to do a trial with pancreatic enzymes - I have been reading some articles, including one that 1 out of 3 Celiac disease patients could benefit from pancreatic enzyme supplementation.

I am finding that if I eat fat - I have digestive issues. Low fat, I have a lot less issues....

Pancreatic problems make sense because if the body is not absorbing nutrients properly all of the things you mentioned can occur due to mineral/vitamin deficiencies.

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I've had acute attacks of pancreatitis in the past and had my gallbladder removed just in case it was a cause based on medical advice from quite a few specialists (my gallbladder showed no stones upon scans or biopsy, just a bit of inflammation). Apparently small gallstones or sludge can often be a cause of pancreatitis and these do not show up on scans.

It looked as though I had developed chronic pancreatitis last year after my acute pancreatitis attacks. My symptoms were steathorrhea, abdominal bloating, gas (from both ends), nausea, abdominal pain/discomfort etc - in hindsight, very similar to celiac disease. Most of my pancreatic scans (CT and MRCP) were negative, although I did have an US scan which indicated pancreatitis.

I had a blood test for celiac disease last year plus a colonoscopy and gastroscopy, both with biopsies (although only one per intestine). All results were negative.

After I went to a different specialist, I was re-screened for celiac disease this year and, surprise, surprise - my blood test was 50% higher than normal for celiac disease! I had a gastroscopy last week (multiple biopsies)to confirm any intestinal damage and am seeing my specialist in a few weeks time to discuss. All advice I have been given is to go on a trial gluten-free diet even if the biopsies are negative - hopefully my specialist will be in agreement. If not, I'm going to do it anyway.

I guess my case history shows that there may be a connection between pancreatitis and celiac disease. I'm not sure whether my symptoms will abate following a gluten-free diet but I'll keep you posted.

JC

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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