Can chronic pancreatitis cause constant burning tongue?

Digestive health
1

I was diagnosed with chronic pancreatitis approximately three years ago, mainly based on slightly elevated lipase levels (usually appr 50-75, with the normal range at this particular lab being 15-48), as well as an intermittent slight tingly, prickly feeling in my upper left back. I also had a couple of episodes of what I now believe were acute pancreatitis (one about eight or nine years ago, then again two or three years ago), horrendous pain directly in the middle of my upper abdomen that did not respond in any way to the antacids that I gobbled at the time, knowing nothing of pancreatitis and just believing it was something stomach-related. I was not instructed to do anything different, i.e., diet, etc., upon diagnosis of cp. Admittedly, I was terrified at the time (and still am) of pancreatic cancer, and had no idea of the terrible nature of chronic pancreatitis, and considering that I did not have any daily/constant pain at the time, I did not go out of my way to find out what measures to take to try to protect myself against the progression of cp. Indeed, I had no idea cp was an incurable progressive disease.

Also, every imaging test I've had shows no sign of cp, only the lipase levels. I've had two CT scans, an EUS, an MRI, and various ultrasounds.

Over the last three years, the pain/discomfort/ symptoms have gradually escalated to the point where about a month and a half ago, things seemed to sort of turn a corner for the worse. I've had pain, burning, discomfort every day -- upper middle-to-left ab, as well as mid- to upper left back. Also, front shoulder ache, both shoulders, sometimes simultaneously, sometimes individually, in the soft area below collarbone.

And off and on for six months or so I've had a burning feeling in my mouth, in my tongue. It's gotten more regular over the last month and a half.

I started taking vitamin c and grapeseed a few weeks ago, though with no noticeable effect.

Anyway, I'm trying to find out if anyone else has this burning tongue/mouth. It seems to be directly correlated to the burning in my abdomen and back, but I can't find anything about it on the internet.

One other thing -- can anyone tell me if they've had their CA 19-9 tested, and if it has gone up? I had it tested first in May 2015 and the level was 16 (anything under 34 is normal), then tested again in April 2016 and it was up to 23, then tested again on December 2, 2016, and it was up to 25. My gastroenterologist basically waved it off as okay because it was still under the 34, and he tried to say that it was normal to 'fluctuate'. The thing is, to me, 'fluctuating' implies going up and down, whereas mine has only gone up. In the three times I've had it tested in the last year and a half, it has gone up nine points.

Sorry for the extremely long post. It's my first time posting on any site re: pancreatitis.

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Hi , I was battling pain in my right side and bloating for years, had lots of ultrasound tests blood tests and nothing ever was discovered. I then started with chest pains and had a MRI with contrast which showed scarring on my Pancreas. Saw my specialist in Leeds who put me on pain killers. Also Creon 25000 I now take about 30 a day and my symptoms have remarkably decreased. Pain is now manageable as well as my toilet issues.

I think Creon could help you.

Good luck

Kevin

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Hi, Kevin. Thanks for your response. I have heard of Creon, of course, though have never taken it and am unfamiliar with the dosing.

When you say 'Creon 25000' and '30 a day', is Creon 25000 the strength of the enzyme/supplement, and do you actually take 30 pills/tablets a day? And how long have you been taking the Creon now? I'm in the States, but my husband is from Leeds, by the way.

Thanks again.

-- Aprill

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Creon 25,000 means 25,000 units of lipase enzymes (along with Protease and Amylase) per capsule. Your pancreas usually releases about 750,000 units whenever you eat, so Creon is supposed to take some of the burden off the organ and help you to digest your food.

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I agree that Creon could make a difference for you.  I assume you're now eating a low fat diet all the time and not drinking alcohol, if your discomfort is increasing you'll need to follow those rules.

The dosage of Creon can vary from person to person.  It's a digestive enzyme not a drug in the usual sense so dose isn't strictly sensitive.  You can try different doses to see what works for you.  Start lower and work your way up depending on how you feel.

After months of trial and error and sometimes plateauing for awhile, I'm currently taking 75,000 immediately before food and if I'm still eating 20 minutes later I take another 75,000.  It's working for me but may need to be modified again, life changes often with CP. 

Creon has changed my life actually, I can leave the house now, I went out for the entire day on Christmas Day, first time in years.  I admit I had to watch what and when I ate and I did feel uncomfortable after two or three hours but I made it through the day nonetheless.

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Hi Skribbler,

Have you heard of the TP/IAT surgery, would you consider it? Have you lost weight?

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Hi, Jon. Thanks for the information on Creon. One of the things that has puzzled me re: lipase levels is this: if a person's blood lipase levels are elevated (slightly or a lot), how is it that that person needs an enzyme supplement, like Creon? Wouldn't the elevated lipase levels mean they are producing more than enough of the enzyme, rather than too little? How could they then need a supplement? I realize I sound rather ignorant, please forgive me. Thanks.

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Hi, Candice. Yes, I have heard of the TP/IAT surgery, though admittedly I haven't researched it thoroughly. At this time, I would say, no, I wouldn't consider it. From most things I hear about pancreas-related surgeries, the patients often seem to find themselves in worse shape afterwards than before they were operated on. Certainly not always, but often. Again, I know very little about any of it, just things I've read here and there.

Yes, I have lost weight, presumably from my limited food intake. I don't know what I can eat, so I eat little. I do feel sometimes as though I'm in a nightmare, if you'll forgive me for saying so, because I sure do love to eat. Not that I was exactly overweight before, but I love my ice cream, for instance, and now I feel rather lost without being able to indulge in my bedtime treat. And worse, it's not as though abstaining makes me feel great/pain-free, but if I don't, I'm afraid of the worse consequences.

Anyway, apologies for rambling. I'm trying to find out if anyone has ever heard of or experienced burning in their tongue/mouth with cp. I have a constant burning sensation that seems to be directly connected to the burning pain in my left mid-to-upper back, and left-to-mid-abdomen. Also, over the last few days, the shoulder pain/ache has been quite severe, front and back, both shoulders, alternatingly and sometimes simultaneously.

Thanks for your response and any advice you have.

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Hi, Reefsider. Thanks very much for your reply. I have adopted a low-fat diet, although up until recently, I could seemingly eat fat without problem -- but I had gone off meats. The problem is, there doesn't seem to be much of anything one can eat to get enough protein. I'm picky about fish, only like white fish such as flounder and sole, which is not always in abundance, and as much as I enjoy beans/legumes, I have read that unless they are prepared a certain way, they can be toxic if eaten regularly. And I've heard bad things about soy also, which I don't care for anyway. Nor tofu. Which basically leaves me with chicken, which I like very much. It's just difficult when trying to prepare meals for the family if I have to make chicken for myself all the time.

Sorry for complaining. No, I don't drink alcohol anymore, haven't for over 12 years, though prior to that I was a very heavy drinker for the better part of a decade. Presumably that was the cause of the cp, although I never had an ap episode when I was a drinker. I was a smoker until about eight months ago too, although I had cut down over the years until I was smoking only three cigarettes a day when I quit.

I'm just very scared and depressed about the prospects of everything, and the fact that basically no one -- including medical people -- seems to know anything about the pancreas. And the fact that there is no cure scares

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me very much. (Sorry, I clicked 'reply' b/4 I was ready.) I have so many fears.

This burning in my mouth/tongue is something no one seems to know anything about. It seems directly related to the burning pain in my upper left back and upper abdomen. And this terrible ache in my shoulders scares me. And the increase in the CA 19-9 levels from 16 to 23 to 25.

Thanks for listening, and I'm glad you were able to leave the house on Christmas. Do you mind my asking your age?

Thanks again.

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Yes I take 30x 25000 per day.you can't od on Creon my specialist told me ,2 years on Creon

Still get a bit of pain and bloating but by far nothing as bad previous to taking it.

Hope your Husbands a Leeds United fan were playing best football for years tell him and pushing to get back in PL

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Hi, Woody. Thanks for the clarification. I'm still not too sure about why, if blood lipase levels are elevated, someone would need a supplement enzyme. Wouldn't elevated lipase mean the pancreas is producing MORE than normal amounts, rather than less? It seems confusing to me, although admittedly I haven't discussed enzyme supplements with my doctor.

Yes, my husband is a huge LUFC fan, although unfortunately we don't get many Championship matches on TV over here, only Premier League. In fact, my husband's been here for 13 years, just about the time Leeds was relegated, I believe. Hopefully, as you say, they'll be back where they belong very soon.

Thanks again for your response, and if you can explain at all about the elevated lipase requiring enzyme supplements, that would be much appreciated as well.

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I think it's because enzymes like lipase and amylase aren't supposed to be in the blood stream, and high elevations of them means your pancreas is not working properly.

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Thanks. Would you happen to know, or have any idea, what it means if lipase levels are elevated (not in the extreme, but above normal), but amylase levels are normal? My lipase levels have fluctuated since it was first tested about 3 1/2 years ago (at the time it was just routine complete blood work which caught my doctor's attention because it happened to show a lipase level of 50, 2 points above the normal range of 15-48), with levels usually just above the high end of normal, sometimes higher, and once or twice within the normal range. But my amylase has always tested normal.

I read somewhere that a diagnosis of pancreatitis should only be given if both enzymes are elevated. Of course, that scares me because I wonder about even more sinister problems, as terrible as cp is.

Thanks again. I really appreciate your time.

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I'm nearly 66.  I've always been young looking, my son and I always had to ensure people knew we were mother and child because everyone thought we were partners lol, that is until this ghastly chronic pancreatitis reared it's ugly head just over a year ago.  I've aged about 20 years in the past year my doctor told me, not that he had to, it's very depressing, and I move like an old person now too, very protective of my abdomen even unconsciously.  Thank goodness I'd ticked off most things on my bucket list.

I kind of wish I had been a drinker sometimes just so I could justify this hell, but we have to deal with the hand we're dealt.

There are a lot of protein foods, don't forget eggs, even non-fat greek yoghurt and cottage cheese which is low fat, and nuts, almonds, tuna, turkey breast and chicken breast and shrimp as well as all the other fishies. 

There are vegetables like broccoli and brussel sprouts but if you bloat avoid the cruciferous veg category.  If you like porridge (oats) it has protein and is a low GI carb.  Quinoa is a protein and can bulk up a meal too.  Google some low fat recipes it will help you. 

This a link to a cookbook for chronic pancreatitis that I found on an American Pancreatitis site awhile back, have a browse.  The author is on the board of the hospital if I recall correctly, she also writes recipe books for a living and has CP so I assume she knows her stuff.  I'm happy with my diet and don't have to please anyone but myself now but have tried a few of her recipes. 

https://www.pancreasfoundation.org/wp-content/uploads/2013/11/NPF-Cookbook-2015-Update.pdf

 

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Thanks, Reefsider, for your lengthy and thoughtful response. I appreciate it.

I did forget to mention that as much as I used to enjoy nuts of any kind (almonds, peanuts, walnuts, etc.), I can no longer eat them (haven't been able to for a couple of years now, I would say) as they cause me incredible pain. As does anything with nuts in it. And unfortunately, I tried greek yogurt and found it horrible-tasting. I've never been much of a yogurt person anyway (apart from the frozen kind), but I just could not palate the greek variety. Not too sure about cottage cheese. I do, however, love oats. And turkey breast. Tuna as well. Guess this is just extra difficult around the holidays. (Remember, it was Thanksgiving here just over a month ago, which led right into Christmastime.)

I do know what you mean about looking/feeling older. I see the aging in my face all the time, the worry and fear and anxiety do awful things to you, and day-to-day activities that were taken for granted until not so long ago become difficult.

Thank you again for your reply. I hope you have a very good day (and an even better new year).

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I was diagnosed with CP over a year ago and now my GI doctor doesn't think I ever had pancreatitis. My tongue bothers me a lot. It feels sore and I keep getting little sores in my mouth too. I don't get shoulder pain but I get a pain in my ear usually when my upper abdomen hurts. I was on Creon for about 9 months for the diarrhea. I'm off of it now and no diarrhea! Seems we all have different symptoms!

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Nina out of interest, we're you ever tested for crohns? It's associated with mouth sores

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Crohns is associated with mouth sores. Not sure if you've been tested for this? I'm in the same boat as you. Can barely eat. Weigh 39kg 85 pounds. Struggling like crazy.

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I've been tested for everything! I was told over a year ago by one GI doctor, that he thought I had CP, then was told a few months ago by another GI doctor, that he didn't think that I ever had CP. He thinks I have IBS. I've been feeling a bit better lately and now am putting on weight again so have to watch my eating. I completely changed my diet to eat nothing but natural healthy foods when I was diagnosed with CP and I attribute that to my feeling better and losing 20 lbs. So since I was feeling better I started to eat more and added some not so healthy foods to my diet and gained 10 lbs back, so now I'm trying to diet again.