Can chronic pancreatitis cause constant burning tongue?

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

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.

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.

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

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.

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

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.

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.

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.

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

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).

Hi! How old are you. I'm going to see a specialist on Monday about Burning Mouth Syndrome. I have started experienced it in September 2016 it started just about 3 weeks after I stopped breastfeeding. ? I'm 43 now. I think it's hormones related. I'm healthy and non smoker. Over this time I've done blood tests even went to see the Consultant at Guy's Hospital was thinking of Cancer. Now a month specialist! !! I haven't got any pancreas problems or health at the moment. Drink wine over weekend and it's come to more than 14 units 😆 but it depends on the week. Don't forget I was pregnant and didn't drink at all when was feeding it would be definitely 14 units per month. Well, good luck and I let you know after Monday what it is.

Hi, Natallia. Thanks for your reply. I doubt that this is the same as what you are experiencing, as I am much older than you (post-menopausal), and the burning in my mouth does somehow seem connected to the burning/prickling in my upper left quadrant and upper-to-mid-left back. I have had a hyper-thyroid, though I'm no longer on medicine for it. Please do let me know what you find out. Thanks, and good luck.