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Pancreatitis And Celiac Disease


Carriefaith

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Carriefaith Enthusiast

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).

Open Original Shared Link

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"

Open Original Shared Link

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

Open Original Shared Link

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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red345 Apprentice

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.

Open Original Shared Link

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.

Carriefaith Enthusiast

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.

  • 4 years later...
ravenwoodglass Mentor
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.

JBaby Enthusiast
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).

Open Original Shared Link

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"

Open Original Shared Link

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

Open Original Shared Link

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.

  • 5 months later...
Millie Newbie

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.

BlueTaelon Rookie

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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  • 4 weeks later...
deezer Apprentice
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?

deezer Apprentice
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.

BlueTaelon Rookie
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)

  • 3 weeks later...
Natascha Newbie

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.

deezer Apprentice
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.

  • 1 month later...
willabec Contributor

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).

Open Original Shared Link

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"

Open Original Shared Link

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

Open Original Shared Link

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.

  • 1 month later...
ResaC Newbie

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 Open Original Shared Link, 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.

  • 3 weeks later...
k2626 Explorer

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!

  • 1 month later...
Ayn M Gill Rookie

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

  • 1 month later...
ivegotitalso Rookie

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).

Open Original Shared Link

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"

Open Original Shared Link

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

Open Original Shared Link

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.

  • 3 months later...
irahappy1 Newbie

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.

  • 3 months later...
serenity now Newbie

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?

  • 2 months later...
deezer Apprentice

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 Open Original Shared Link, 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?

  • 1 month later...
deezer Apprentice

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.

  • 6 months later...
JC1967 Newbie

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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    • WildFlower1
      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
    • WildFlower1
      Thank you for the reply! Doctors over the years have tested me for everything under the sun and tests are normal, except the decreasing bone density, high FSH (in regards to infertility), lower iron, and all the other celiac symptoms I experience. When I was 15 the infertility started (my whole life growing up I always ate gluten, and always had severe stomach problems, I’m an adult now and I still remember the stomach pain as a child) and then from here, they couldn’t figure out why. At the same time I was having all these celiac symptoms but nobody ever put two and two together.   Eventually in adulthood I went off gluten and dairy and felt better. Later in life, the topic was brought up by doctors, but they could never actually test for celiac because I was off gluten for years.   Just recently multiple doctors brought it up again, and said I should rule it out. So the ruling out of celiac, which is direct correlation with these symptoms, infertility at a younge age, on the edge and getting into osteopenia, etc. etc. is the concern. I was off of dairy for the same time as gluten because it made me sick. I did not surely have adequate calcium/D intake as well over these years.   The matter of concern is to once and for all get celiac ruled out for my own health, a gastro doctor recommended I get it done and other doctors to confirm yes or no to officially rule it out.  For these 6 weeks I have not been eating enough gluten then it seems, if 2-3 slices of bread a day is not really enough. I should increase my intake of gluten then and extend the test time?   Thank you very much for your help!! The test for Immunoglobulin IgA being a value of —> “1.25” shows it is in the normal range of 0.54-4.17 g/L on the test. 
    • trents
      Welcome to the forum, @WildFlower1! The reason you are seeing conflicting results when you research the length of time recommended for doing the "gluten challenge" is that the guidelines have recently been under revision. So there are two components: 1. amount of daily gluten consumption and 2. duration of that amount of daily gluten consumption Recently, the guidelines have been under revision because the medical community was sensing the previous standards were too relaxed, particularly in the daily amount of recommended gluten consumption. The more recent guidelines seem to be calling for higher amounts of daily gluten consumption over (perhaps) as shorter period of time. So, it is becoming a daily minimum of 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks. Personally, I would recommend that amount of consumption be extended from two weeks to four weeks to ensure valid testing. Your Immunoglobulin IgA at 1.25. Was that within normal range? If that one is low, you are IgA deficient and other IgA test results cannot be trusted. But regardless of whether or not you have celiac disease or NCGS (Non Celiac Gluten Sensitivity) the antidote is the same, namely, a gluten free diet. What would you do different if you had a more confident differential diagnosis? And there are other reasons for the development of osteopenia/osteoporosis that you probably should explore. Are you on any serious supplementation for D3 and magnesium?
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