If you are experiencing pain, nausea, and other discomfort after acute pancreatitis you may have minimal change chronic pancreatitis. Many people have asked me why they have had recurrent attacks of acute pancreatitis or have had one doctor diagnose them with chronic pancreatitis only to have another say they don’t have chronic pancreatitis or any pancreatitis at all.
For those of you who have had this kind of experience with your pancreatitis journey let me assure you that not all doctors know what they are taking about when it comes to acute or chronic pancreatitis. Even those who have some knowledge don’t know everything even if they think they do. In fact …
They have “cookie cutter” diagnostic criteria and for those who even know ANYTHING about the disease and can even recognize it in a clinical setting miss it or rule it out when you don’t fit that “cookie cutter” mold.
Diagnostic criteria and scoring for acute pancreatitis
Diagnostic criteria for chronic pancreatitis
IF someone doesn’t fit the “cookie cutter” mold the disease is most often ruled out. But …
Dr. Sutherland says different in regards to chronic pancreatitis and he has a list of certfications and is kudosed as being one of the top authorities. He is:
- Director of the Diabetes Institute for Immunology and Transplantation
- Head of the Transplant Division in the Department of Surgery
- Holder of the Golf Classic “fore” Diabetes Research Chair
- Professor of Surgery at the University of Minnesota
I found this on Dr. Sutherland’s blog/forum: “There are articles on minimal change CP that I will send you the references. We also have an abstract showing that the traditional view that an EUS has to show 5 of 9 criteria for CP to be diagnosed is not correct, even one criteria has been associated with documented CP under the microscope.” Read the article here
Now keep in mind he makes a boatload of money from pancreas surgery and is regarded as one of the best when it comes to TP/AIT so there is always the possibilty he is pushing for more surgeries but my gut feeling and common sense tells me that he is correct about minimal change chronic pancreatitis.
Clinical Example Of Minimal Change Chronic Pancreatitis
Drs. David C. Whitcomb from the University of Pittsburgh, and Christopher E. Forsmark, from the University of Florida discuss recent advances in the diagnosis and clinical management of pancreatitis. The patient they discuss has MCCP (minimal change chronic pancreastitis).
[youtube qxIk1nUtxVU]
This fairly new recognition of minimal change chronic pancreatitis means you most likely have chronic pancreatitis if you continue to be symptomatic after acute pancreatitis, whether or not your damage presents on radiological testing in blazing colors. IF you have symptoms, especially pain, it isn’t all in your head, your symptoms are real and you need to get a handle on your condition and control it or you may be faced with a life of misery or a radical TP/AIT.
Minimal Change Chronic Pancreatitis (scholar type articles):
1: article one
“F you have symptoms, especially pain, it isn’t all in your head, your symptoms are real and you need to get a handle on your condition and control”
How do you treat early CP? It’s always going to be same outcome when it comes to pain, whether you catch early or not. Unless you want to starve the patient to death.
I’m not sure what your point is Larry. My pain is controlled. In fact unless I do something really stupid I have none. If you are talking in generalities then yes others who are in pain need to get it controlled and then become pain free (goal) if possible.
How do I treat early CP? I treated mine with diet and supplements just like the posts on this blog say. I don’t treat anyone else.
I don’t agree with your last statement about outcome. Myself and a few others who have adopted my lifestyle, regimen, protocol or whatever you want to call it have proven differently. There are some who will never heal properly. Those who have been sliced and diced, for whatever reason, seem to always have difficulty.
Is there a Diet for Chronic Pancreatitis/ available?
Hi Victoria 🙂 – Yes on the diet, no fat, no alcohol. You need to find the posts in regards to diet and also the post on how to do a food diary. The food diary prep and implementation are important. Without that step you are flying on my word and you’ll never really know what is safe for you. Do the food diary and make sure you do the prep first. Think plant based. Modified vegan. Vegans use fats, oils, and foods that contain to much fat (avocado, coconut, nuts, sunflower seeds, etc) in prep and cooking. You shouldn’t if you want to heal. So for the first 6 months it is modified vegan, supplements and doing everything by way of the food diary. Good luck!
Watched the video. Not happy. Yes, the dr achieved a diagnosis but it sounds as though the patient is worse off. There are too many bad news stories attached to the methods used for diagnosis, in particular ERCP. Yet the dr doesn’t care, he is only focused on the challenge of achieving a diagnosis. How is this helpful?
Hi Alison. IMHO the patient is always worse off when undergoing orthadox care simply because most doctors do not have a clue as to how to treat either acute or chronic pancreatitis. Most often their only answer to (1) AP is NPO (no food) and pallative support (drugs) until it resolves by itself due to no food/rest. In the event of severe acute they still have no clue how to stop it and then certain life saving support care, including surgical procedures may become warranted. But they never attack the problem, inflammation. (2) The videos main message is that some doctors are finally becoming aware that a patient doesn’t need to fit their “cookie cutter” criteria mold to in fact have chonic pancreatitis. That doesn’t mean they have figured out how to treat it, it simply means that some are actually beginning to use their brain in an open fashion to think out side the box.
The main reason I posted this minimal change chronic pancreatitis article was because there are so many folks who most likely have chronic pancreatitis yet they receive a misdiagnosis due to that “cookie cutter” criteria. They don’t fit, so the doc, in his/her infinite wisdom, says they think the patient is either faking or simply nuts and tells them there is nothing wrong BUT to come back if symptoms get worse. Anyway, that is the message of this post and the video message is hope for CP patients without a diagnosis to get a diagnosis. Yet, like I said that diagnosis may be worthless due to the fact that doctors don’t know what to do anyway except give out pain meds, lousey diet info and when opted for surgical procedures like debridement (most often seen in necrotic AP), resection, whipple or TP/AIT.
Hya!
In short: for the last two years several health problems which, in my view, relate with the pancreas. (Floating, stinking stools, steatorrhea, flatulence (smelly), pain upper left abdomen right beneath the lower rib within 20-30 minutes after a meal, fatigue). I even spent some days in the hospital last month because of it.
Pancreatine pills (the ones freely available), your low fat diet and smaller portions more often a day helped enormously.
Yesterday I visited my dr again. he says it can not be the pancreas because lab values and a CT scan showed everything is normal, apart from a small increase in amylase.
He says it is irritable bowel syndrome.
He said it can not be minimal change chronic pancreatitis because that is a rare condition.
There is something amiss with his reasoning there of course, but I’d like to know: do you know whether MCCP is rare or not?
Or is it not uncommon (it’s only rare when no one is looking)?
I have to go back to my GP and I would like to say, or better show, that it is not simply me imagining having a rare disease.
Thanks in advance for your answer.
Hi Sylvia, sorry to hear you are not feeling well. Here’s the deal. I can’t diagnose. I can’t tell you that you might have such and such but IF you ever have uncontrollable abdominal pain that is so severe it basically disables you while present make sure you go to the ER and get re-evaluated. Don’t wait till the pain is gone, go. Have someone drive you or call the EMT’s for a ride. Between now and then you may want to get checked for celiac disease for it can cause almost everything you have mentioned and a lot more. The thing I find interesting is that a low fat diet and digestive enzymes seem to help. That is probably not gonna help celiac disease but I don’t know that. IF you are taking grape seed and vitamin C THOSE will help celiac disease in fact C has been shown to protect the small intestine against gluten.
As far as minimal change chronic pancreatitis being rare I doubt that. What I do not doubt is that most doctors don’t even know how to diagnose it and what MCCP actually implies when you realistically look at what causes CP in most cases, recurrent acute pancreatitis. Alcholic pancreatitis sometimes presents as CP first instead of AP. Autoimmune pancreatitis almost always presents as CP first and is often misdiagnosed as pancreatic cancer.
IF it were me I’d ask to be checked for celiac disease antibodies (don’t stop eating gluten) and also IgG4 (raised in panc can and autoimmune panc). Good luck 🙂
Hi THG!
Thanks very much fir yor reply. Much appreciated.
I was diagnosed with celiac in 2013 and have been on a strict glutenfree diet ever since.
I mentioned I spent some days in hospital last month. It was via the ER. I was taken in because they thought I had pancreatitis – initially, seeing my distress and the things I was complaining about. When lab values did not show a rise in lipase and a mere subtle rise in amylase, and a CT scan that did not show anything amiss, the aformentioned doctor sent me home: “it’s probably your intestines”.
When I returned to him to report how I had been doing (“I am doing much and much better, as soon as I started taking pancreatine and a low fat diet, i.e. 20 grams of fat max a day”) he wavered my suggestion of MCCP off: “That is a very rare disease”, looked at my lab values on his monitor again and repeated his words about me having IBS.
Prior to our last meeting I had sent him a letter. The letter contained a medicle article about MCCP:
http://www.iosrjournals.org/iosr-jdms/papers/Vol13-issue12/Version-5/N0131257879.pdf
I wanted to avoid the situation of having a doctor that is in the dark when it comes to MCCP and him pointing at my intestines again.
Because when in pain the pain feels like a screwdriver that is deeply stuck in the upper left abdomen, it does not crawl, it does not move to the left, the right or towards the lower part of the abdomen, it is there at the exact same spot all the time. So IBS strikes me as odd.
Anyway, I seriously doubt he read the article.
I did not tell you that ever since 2012 I have had health issues. Every time I felt that screwdriver deeply stuck inside my left abdomen. Sometimes it was accompanied with a light tingling pain in the upper right abdomen. Pain was there 20-30 minutes after a meal. A meal that contained fat. But it took me a long while to discover that link between fat and my complaints.
In 2012 I was taken into hospital, again via ER. They thought of AP then – I had all the classic, typical symptoms. But a CT scan which was taking within 48 hours showed a normal pancreas.
I learned just recently that nothing may show up on a CT scan when taken within 72 hours of hospital admission.
Lab values were not normal, but not a threefold rise. More of a 2-2.5 rise. 🙂 CRP was high: 345.
The CT scan that showed a normal pacreas also showed a oedematic colon (colon ascendens, oedema until the flexura hepatica) but a coloscopy showed everything was fine with the colon.
Because of those findings they dismissed the earlier suspected pancreatitis and embraced the idea of colitis.
Lately I have learned by searching the internet that AP may not be excluded when having a CT scan with normal pancreas and oedema in surrounding parts. I found articles where they only learned after surgery that the pancreas, pancreatitis, was the actual problem.
I am Dutch, living in the Netherlands, and sadly do not know any doctors that are familiar with MCCP.
Anyway, thanks for reading. Thanks for your help. Thanks for putting up this website, THG, and for sharing all your experiences and findings. I do not doubt that without your knowledge I would still be miserable and in pain.
You are most welcome Sylvia I’m sorry I haven’t been more help. It is interesting to find you have been tested for celiac disease and have it. It is also interesting to find that you have been doing enough research to know that CT scans done at inappropriate times (before 72hours of AP onset) usually are worthless in regards to showing pancreas damage. Even doctors don’t know that or they wouldn’t do them until 3 days after onset of AP symptoms. Even a normal pancreas at 72 hours doesn’t mean you didn’t have AP. I would be more interested in the enzyme, WBC and CRP elevations. Did the docs call what they saw on CT (edema) edema or ascites which is fluid collection in the peritoneal cavity, causing abdominal swelling and is seen in pancreatitis? They may for some reason use the names interchangably. Anyway, I hope you soon feel much better BUT if you do have another attack make sure you make it to the ER so there is another chance for a firm diagnosis. 🙂
Interesting, ascites related to pancreatitis!
I looked up the report of the CT abdomen made in 2012. To me it seems, alas, that they do not mix the words. (Although I really do not understand the difference between those two words when it comes to the abdomen).
I tried to translate the findings into english, hopefully it makes some sense to you (I do acknowledge that you can not diagnose or give second opinions, but in my experience a so called educated patient sometimes knows more than the average doctor 🙂 )
“CT abdomen shows image of colitis ascendens reaching as far as flexura hepatica:
Edematous colonic wall thickening practically circular at one place on the colon ascendens. The surrounding pericolic fat tissue is minimally edematous infiltrated as is, very locally, the peritoneum. No ascites to be recognized.”
Btw: Lipase 137 U/L (22-51), amylase 218 U/L (0-107), leukocytes 19.6 10^9/L 4.0-10.0).
I read some articles a while ago where doctors described that what seemed to be a colonic problem turned out to be a secondary infection caused by a clear pancreatitis after one glance on the pancreas while operating the patient because of the colon.
So personally I think it may very well be I had a colitis, but I still think the pancreas was the culprit, but the doctors never acknowledged that.
I already feel much better, THG. Besides the low fat diet and the pancreatine I am taking Emblica officinalis (Amla powder) which comes up frequently as a natural aid against pancreatitis. Studies show promise.
I noticed green tea extract (capsules) was particularly helpful against the overwhelming fatigue.
Glad you are feeling better Sylvia 🙂 Nothing wrong with Indian goose berries. Full of antioxidants that surely help. Be careful of green tea extract. It isn’t as safe as they tout it to be. Drink green tea instead and avoid possible trouble.
Thank you for all this wonderful information!! I KNOW I have chronic pancreatitis but because I don’t fit their “criteria” then I don’t have it! They have ruled everything else out. It feels as if they really don’t want to give a diagnosis of cp and just want to blow my symptoms away….its frustrating t say the least but armed with this info I can be ready for them!!! THANK YOU!!!
You’re welcome Stacy Lee 🙂 Hopefully the info on my blog will help you beat pancreatitis.
Hey Health Guy. Just was told after an endoscopic ultra sound that I have advanced scarring on my pancreas due to high triglycerides. My lipase is normal and amylase was a 25 (bottom of normal). I have never had “pain” in my upper left abdomen just a constant slight discomfort with the exception of once or twice I had an immediate sharp pain but it was gone in seconds. I just started a low fat diet and the enzymes but they don’t seem to have any affect on my “slight discomfort”. Does this sound odd or normal for CP? Also, no bathroom issues for me… But the doc said eventually real pain and digestive issues will come.
Hi Gavin – “I just started a low fat diet and the enzymes but they don’t seem to have any affect on my “slight discomfort”.” You may not see over-night miracles. Give it time. In order to prevent more pancreas damage, even reverse existing damage (IF IT WERE ME and it is, was etc) I’d follow a strict low, low fat diet, NO alcohol, and go to my health store and get Vitamin C, grape seed extract and curcumin and start taking them. I’d definitely want to put my CP into “remission” if possible.
Do you have any references to doctors discussing reversing potential of damaged pancreas? I’m encouraged by your progress and many on your commenters. I’m going to pick up the stuff you mentioned. Thank you.
My doc and nutritionist say 40-50grams of fat a day total is their reccomendation also my doc says the EUS shows extensive scarring but he believes the function of my pancreas is still 80-90 percent. Does this sound odd?
Also, yes I am thankful for no pain or bathroom issues…hope it stays that way.
Hi Gavin – Since you have extensive scarring you may want to tread lightly with the fat content. I have found most doctors and nutritionists don’t know squat when it comes to diet for those who have a damaged pancreas. In my opinion and experience 40 – 50 grams of fat daily is a tad high. Some people tolerate more fat that others but just remember this: It isn’t your doctor or nutritionist that has to deal with the results should you suffer more damage and/or an acute pancreatitis attack. BUT as always you have the choice to do whatever you feel is right for you.
By the way Gavin be glad you do not have the bathroom issues or the intense pain that is a hallmark of pancreatitis. Trust me, been there, done that, it ain’t a pretty picture.
Hi Health Guy,
Hope this email finds you well. Okay I had another endoscopy they found no ulcers etc but I could of told them that. My Gastro Dr has given me a script for motilium – or domperidone. She said it will help with nausea and getting food through my stomach quicker. My GP is the only one thus far who has said it could be pancreatitis. I think I have minimal change pancreatitis because my bloods and ct scans are normal. But all my symptoms line up with pampncreatitis. In your humble opinion have you ever tried this medication? I’m worried to try it in case it makes me feel worse.
Thanking you
Stacey.
Hi Stacey – I answered your question via your other comment. Oh and I suppose it is always possible that you have minimal change CP. My next question (because I don’t remember whether you told me or not) is have you ever been diagnosed with acute pancreatitis?
I have had abdominal pain for three years. Main complaint is epigastric pain after eating (really anything; at first would walked in the night with nausea and pain after a high fat meal but I don’t wake with “episodes” it’s mainly always there) and I do have lower fecal elastase (199 then 360) I have had all clear scans until last week. The MRCP w secretin showed “borderline diminishes precontrast t1 hyper intensity” seen in chronic pancreatitis. Dr says its IBS. I’m pushing back but don’t know what to do in the meantime. I have avoided alcohol 6 months now but eat higher fat due to underweight and small intestinal bacterial overgrowth which means I need to avoid certain carbs. I don’t know if I ditch that diet and deal with SIBO because I can’t do both low carb low fat no animal protein and live.
And do I need enzymes? Do you take them or just your supplements?
Hi Kristin – lower fecal elastase can show with bowel disease, infection etc. You may have some form of IBS just as your doc suspects but there may be more to it. The secret is to find out what type of IBS. The colon is found in the region you are experiencing pain. IBS can cause nausea. It could be IBS but like I said there may be more too. I’d keep seeking answers, a concrete diagnosis. And then work from there.
I forgot to mention my MRCP showed diminished precontrast of t1, consistent with chronic pancreatitis. IBS can’t explain that away.
Kristin – good point!
Kristin: if you have N infection in your bowel plus it sounds like you also have a bacterial overgrowth and IBS has your doctor put you on Xifaxan? It’s an antibiotic just for the stomach which treats IBS, bacterial overgrowth’s, and any infection in the stomach. It’s a fairly new antibiotic. I took it for 28 days in a row 3 x’s a day. Although I still am not out of woods by any means it certainly did help. The minimum you should take it for is 14 days. Thanks Neal
https://www.xifaxan.com/?gclid=COHeyK-n3M0CFVFlfgodArwIbw
Yes I did rifaxin and it improved my stool and elastase a bit but I still have the pain and the change in my pancreas mentioned above so iknow it’s not just SIBO and IBS. Good idea though
Thank you so much for all the information. I have seen numerous doctors and four gastro-enterologists and had a CT scan, two MRIs, two ultrasounds and they all say I have a normal pancreas. I have pain, diahorrea and was losing a lot of weight and thanks to your site I see that I have minimum change pancreatitis. Does this mean that it is easier to heal the pancreas and get rid of the pain following your diet plus the supplements?
Hi Jen – I don’t recall diagnosing anyone?! I’m not qualified to diagnose. But you are welcome for the info. Have you had acute pancreatitis? More than once? If you’ve been diagnosed with acute pancreatitis diet and supplements may definitely help healing.
Dear Health Guy
I am very grateful for the information and it;s so reassuring and good to know that you have survived 35 years with pancreatitis. I am just wondering how you deal with going on holiday? Sticking to the diet must be quite difficult unless you are self catering.
Jen – holidays are quite challenging. I learned to be very picky about what I ate. It’s not easy.
Hi Health Guy. I also had another question. Now that you are healthy are you back to normal energy levels?
Jen – to be honest I had a lot more energy until I had to go gluten free (found out I was a celaic). I’ve been GF for about 6-7 years now and it sucks. There are way to many foods I can’t eat now. I had a LOT more energy before going GF.
@the health guy
Could it be you have a slight iodine deficiency?
Hi Sylvia – it is possible. Thanks – I actually hadn’t thought about that. 🙂
Really sorry to hear that. I thought just sticking to a pancreatitis diet was difficult enough.
Thanks, it’s ok. Just another challenge lol 🙂
Hi Health Guy – two of the symptoms that I have are hot flashes and sweating. I just wondered whether you had suffered from these and if you did, did they improve with the diet. I am currently doing a lot of juicing and feeling a lot better with regards to the pain but I still have hot flashes and sweating.
Hi Jen – nope no hot flashes here. Glad you are feeling better 🙂
These could be down to the menopause then, and probably made worse by my stressing about it!!
Jen – If you’re at that age it certainly could be a menopause issue.
Hi Health Guy – apologies but I have another question. You mention on the website that the pancreas can regenerate itself if you stop the inflammation. Does that mean that the function in terms of the enzymes improves as well?
I have read some research that leads me to believe that certain pancreas tissue could possibly regenerate. I have found nothing that says it will. Yet I have had some people tell me that their scans change from bad to good or damaged (scarring etc) to clean after diet and supplement induced healing. Whether enzyme production improves is not known.
Sorry – just one more question. I have read on some websites that chronic pancreatitis sufferers take Omeprazole but you do not mention this. Do you feel that it is not necessary to take Omeprazole with the enzymes. It seems that whatever you are doing is working, so I would be interested to know.
Jen, some folks with pancreatitis have GERD issues as well which may be directly due to the pancreatitis or may be caused by something else entirely but if it helps it’s all good. I’ve never really checked into WHY docs prescribe that class of medication.
Hello Health guy,
Please see below my case history so from present condition to past. I am also taking supplements as suggested by you below for almost a year now and was better but suddenly got pancreatic back to back two attacks in 2 weeks. Kind request to go through my history and suggest how I can modify my diet, medicines, supplements. Also what you feel about type of my CP ( doctors came to conclusion that its idiopathic). I really have long life to live and urge you to read my case and give your opinion.
Present complaints:
Occasional pains in the epigastrium and left hypochondriac regions. Similar pains on the back.
Foul Eructation and flatulence. Rich food difficult to digest. Unsatisfactory stools.
Medication:
1. Panlipase 20000-25000 TDS (pancreatic enzymes)
2. Sompraz OD ( esmaprazol sometimes when I feel acidity)
Supplements:
1. Grape seed extract 500 mg ( manufacturer royale wellness)
2. Turmeric 400 mg (manufacturer new chapter)
3. Vit C 500 mg ( manufacturer royale wellness)
Past history:
On 16/08/2016
Patient was little better but pain recurred towards afternoon. Patient is NBM.
On 15/08/2016
Patient went to hospital and was given perfalgan IV and pain gradually subsided. But there was some residual pain.
S Amaylase- 512 U/L High
S calcium- 10.2 mg/dl High
S Lipase- 1236 U/L High
CRP- 47.75 mg/dl High
On 10/08/2016
Patient complained of pain in epigastrium travelling to the back. Continued the medication as above. Patient was nbm and recovered but slight pain still persists. Patient had some sweets and popcorn and tofu . next day complaints recurred. Since there was pain, patient took ibuprofen 600 and pain rapidly increased.
October 2015
Pain in epigastrium after rich ,non veg food. Immediately patient went NBM and slowly on liquids and he recovered.
August 2013
Offensive flatulence, eructations, abdominal pain which stays for max 5 mins and disappears and repeats itself. This pain comes occasionally once in 2/3 days.
There is sighing which comes involuntarily. Continuous thinking of disease and fear that it may lead to cancer.
Stool difficult form 2 days.
Medication:
1. Nexium 1 tablet
2. Creon 2 tablets BD
3. Fybogel once at night.
USG: pancreas show slightly increased echogenecity.
On 27/12/2010 he was admitted with the following complaints:
• Abdominal pain since 2 days in the epigastrium and left iliac fossa
• Loose stools 2-3 episodes.
• Foul eructations with abdominal discomfort which was more on taking food and associated with nausea.
O/E tenderness in the epigastric region and vague tenderness all over the abdomen.
Investigations:
S amylase: 1060 U/L
S Lipase: 542 U/L
USG- Abdomen: bulky pancreas with smooth contours and diffuse homogenous echotexture.
17/01/2011:
USG abdomen showed no significant findings but for insurance purpose and keeping the history in mind the radiologist gave report saying Pancreas shows altered echogenecity and impression of early pancreatitis.
Treatment: Creon BD
This treatment patient took for a couple of months and then stopped by self. The 2011 showed few attacks’ of pain on and off which were mild in nature.
In August 2012:
Patient complained of same abdominal discomfort with eructations and flatulence. O/E there was tenderness over the epigastrium.
USG- no significant findings.
On 16/01/2013:
Patient complained of severe pain in the epigastrium with a full feeling in the abdomen, abdomen was bloated. Immediately he was taken to the hospital and put on iv drugs like nexium, perfalgan.
S Amylase : 2704 U/L
USG: was not clear as abdomen was full of gas and hence a CT was adviced.
CT findings: Atrophic pancreas with irregular outline and inhomogeneous density of gland.
Treatment given: avoiding Oils, fats, excessive sugar, non veg.
Medication:
• Nexium 2 BD
• Creon 2 TDS.
Hey Melvin – I’m sorry to hear you are not well. “Rich food difficult to digest.” I am not sure what you mean by rich foods but to me rich food usually means high fat. I’d cut out the rich foods. If you haven’t done it already (sounds like you have not) I’d do the food diary prep and begin a food diary using the directions.
I must admit I am totally amazed that Ibuprofen increased your pain and that perfalgan (acetaminophen) which usually doesn’t help did. I have never found anything to make me suspect Ibuprofen as a inducer or aggrivator of pancreatitis. The closest is this article that states Ibuprofen may have been a potential suspect yet there was no re-challenge to confirm. On the other hand there is information that truly points a positive finger at acetaminophen as a cause of AP. In both cases overdose was the problem. We know that in the Ibuprofen case the guy took a 51 mg/kg dose. Let’s convert that to pounds. I weigh about 150 lbs/68 kgs (if my math is right). 51 x 68 = 3,468 mgs of Ibuprofen in a single dose! That is a TON of Ibuprofen. Anyway … The fact still remains that Ibuprofen did not work well for you and acetaminophen IV did. So whatever works!
I’ve seen this now twice: “Pain in epigastrium after rich,non veg food.”
IF it were me I’d completely overhaul my diet and I’d start with a food diary prep, etc. I’d make sure I was taking 500 mgs of grape seed at least twice per day. 400 mgs of curcumin 2 – 3 times per day. 500 mgs of vit c at least 4 times per day. After 30 days I’d evaluate my progress. If I still had pain I’d increase the grape seed extract to 3 x daily. DIET IS CRUCIAL! The supplements wil likely help but if the diet sucks (high fat with or without alcohol consumption) they won’t be able to completely defend against “rich,non veg food.” If you drink alcohol you need to quit.
Your current prescription drug list is your doctors area.
That’s about all I have Melvin. I hope you are feeling much better soon. 🙂
Thanks you so much Sir, your confidence reflecting in advice is much higher than any top notch gastro 🙂 and I very much appreciate that. If I am not wrong you are a person who has explored each and every aspect of this illness and by sharing this on global platform you are doing amazing job. I am feeling better with your advised protocol and will follow your guidelines. I also learnt that Indian gooseberries and normal clean water enema helps.
You’re welcome Melvin – I hope you are feeling better soon! Indian gooseberries are full of phytonutrients (polyphenols) and those little devils fight inflammation, the inflammation in the pancreas. Hey about the enema thing …
An enema definitely helps. I first learned that when in an acute attack (1979 – 1980?) when I was in desperate need of relief the idea, of doing an enema, popped into my head (I think God popped it into my head cuz I mean really how would I have known?). Anyway I did an enema and shortly after I had almost total relief. It obviously rid my system of all the offending food. I remembered that! That is WHY I have people “prep” with a 3 day fast, then an enema before doing a food diary.
Doing certain things right just seems to work. And not just for me! People who actually do what I did to eventually heal and still do to stay well are finding they feel better and heal too! THAT is the cool part of this whole deal. By the way …
IF you haven’t signed up for the forums you should do that. Then remember to activate your acct via the email (you’ll be sent an activation link) you used to register.
Thanks HG, Since you are been diagnosed with CP for couple of decades now I have question for you. Have you developed diabetes? I hope and pray not so. I am asking this question since my doctor said that I will develop diabetes by next year just looking at MRI two years back. How to gain weight? since protease is also required to breakdown protein which is one of the enzyme produced by pancreas. request your kind advice.
Hi Melvin – To answer your question: “Have you developed diabetes?” NO, not yet and I hope I don’t! THAT would really tork my jaw. If you don’t get the CP under control or into “remission” yes you could very well end up diabetic just as your doc predicts so my goal would be to get the inflammation resolved and the CP under complete control because …
IF you do everything right and get your CP controlled or into remission diabetes may not happen. No promises.
Hi HG,
Just still trying to figure out my pain and nausea. I have an appointment with a new doctor on Monday and am going to go over the whole barrage of tests etc. I have a really important question for you though. Have you or anyone complained of feeling really achy all over your body as a symptom of pancreatitis? I feel so tired all the time and I feel like I just start to feel a bit better then I go to the market to buy groceries then I’m totally exhausted, sore all over and feel like Ive been run over. I’m basically unable to do normal things like my housework, run my kids to school, work, all the things I used to do. I’ve not read any posts here where anyone has said something similar. I really appreciate your patience and support. I hope I’m not wasting your time.
Stacey.
Hi Stacey – you are not wasting my time – so stop that! But I am not going to be much help with this question because I haven’t experienced the achy feeling, just totally wiped at times (when I was sick). Have you been checked for fibromyalgia or lupus?
It could be B12 shortage. Let the doctor check your blood level. Do NOT take any B12 as a supplement before being tested, else spoil the blood results for months, sometimes even years.
Sylvia – to late lol 🙂 I was low on B12 a couple times (before I did supps). Doc actually said I needed some extra. When I remember to take them I have more energy. B12 is in my favorite multi formula (AllOne) but since I found out I am one of the few celiacs that illicit a response from not just wheat, barley and rye but also corn, oats and rice I had to give up my favorite supplement which had the right B12 in it. Oh well, life is hard, then ya die lol
What if your EUS shows scarring but you have none of the symptoms and never had a “flare or attack”? Is that still minimal change pancreatitis? Or something else?
Hi Gavin – since scarring is indicative of CP I’d say it is something definitely worth keeping an eye upon. In other words I would make sure I did everything I could to prevent any more scarring. I’d also want to find out WHY my pancreas was scarred in the first place. There has to be a reason.
I’m having pain in my overall abdomen. I can push in multiple places and it’s tender including just above my waist line. I’m also having some pain in my upper back and lower hip areas. None of this pain is gut wrenching. My upper back pain I tend to fill when I’m sitting back on couch.
I drink heavy when I drink and everything I’ve Googled of course leads me to pancreatitis. I have a gi appt on the 28th. So the only true symptom I have is discomfort when I push into my abdomen. I’ll also get some random sharp pains at times throughout my whole abdomen. Did you experience any of these things?
Forgot to mention had an ultrasound and all read normal.
Hi Chad – Heavy drinking is a risk factor for pancreatitis. IF you have a certain genetic variant you could have alcoholic pancreatitis even though you don’t drink constantly. Alcoholic pancreatitis many times presents in the form of chronic pancreatitis (symptoms etc). Because of this mild chronic pancreatitis doesn’t necessarily have horrible symptoms. Your GI doc appt may shed more light on your situation.
Hi HG,
I’ve been quiet, but I’m still here. As you know I’ve been struggling to get a diagnosis and still am. Well I got my times mixed up for my specialist appointment yesterday so I missed it. Can’t believe it. Anyway I rescheduled my appointment & earliest I can get in is 3 weeks away.
Can I ask you yet another question about chronic pancreatitis please… when the symptoms are present is it normal to feel like you have the flu? ive been feeling pretty good last few weeks so I’ve allowed myself a palm size amount of chicken steamed the last 2 nights, mainly because I really struggle to keep my protein and weight up. Plus I’ve had probably 3 teaspoons of this gut repair stuff from the health shop. It has no fat in it but it’s made from beef gelatin. It’s supposed to repair the gut lining. (Bearing in mind I’m not diagnosed with CP and I know this goes against your advice so I’m not suggesting anyone tries this) Now I’m feeling fluey and yuck.
My symptoms have been more gastritis last few days ie burning nawing pain in tummy with no back pain so I thought well maybe it is gastritis and not pancreatitis. But now I find myself going downhill again. I know if I revert back to fruit, veges and nil fat etc for a few days with rest, I’ll bounce back, but it’s just got me thinking. I was initially diagnosed with chronic gastritis because of the inflammation in my tummy when they did the endoscopy.
As always your thoughts are very much appreciated. Does any of the above make any sense to you?
Stacey.
Hi Stacey – Good to know you are still alive and kicking 🙂
Question: “when the symptoms are present is it normal to feel like you have the flu?”
Answer: It is entirely possible to have flu-like symptoms (stomach flu) with any number of biliary diseases/conditions (gallbladder, pancreas, sphincter of oddi, liver etc), stomach conditions (gastritis), intestinal conditions (IBD) and various cancers. So it’s hard to pin-point flu-like symptoms. By the way none of those examples were meant to scare you. They are only examples and I used them to show how difficult it is sometimes for doctors to pin-point symptom causes for symptoms that occur in so many different conditions. IF I remember correctly one of your scans showed sludge? I’m guessing you have a gallbladder issue and maybe it’s a tad inflamed. That’s just a guess. I’m not a doc. 🙂
Hi HG,
So I went to a hospital appointment last week which my family dr had organised because he is concerned about my ongoing illness and huge weight loss. The surgeon is suggesting I have my gall bladder out he says the reason is my illness sounds like gall bladder because I feel Ill when I eat fat and that there is evidence of sludge and small stones. He says it might not fix my problem but it will take the gall bladder out of the equation. He wants me to see my gastro specialist which is on the 15th Jan to see what she thinks. So I have a few weeks to think about my next move. I’m on PPI medication 2 tabs a day when I try to reduce dosage to 1 tab a day I get a burning itchy feeling in my ribs. My specialist thinks this could be bile building up and causing a back flow. I think I might ask for another ultrasound of my gall bladder to try and get an idea of what’s happening with that.
As always I know your not a dr but your always good to bounce ideas off.
Stacey ?
Stacey it sounds like you have a pretty good team of docs and another ultrasound certainly wouldn’t hurt but it sounds like they have already seen sludge and small stones. My step sister had her GB removed. It got to where she couldn’t eat anything without being ill. Now she is happily eating everything that doesn’t eat her first lol
after this last hospital stay I am really freaked out, seeing that feeding tube in his nose was really scary! so maybe some of you can tell me what a normal day of eating looks like for you. we are now doing the boost clear, but boy they are expensive! keping everything really bland and no oil at all.
Hi Cheryl – I can’t say I have “normal” days of eating. I only eat when I am hungry so I do NOT schedule meals. I may eat two or three times a day or maybe only once. I’ve learned that if I’m not hungry it is usually best not to eat. When I eat it is always a food or foods I know is/are usually safe. I might have some egg whites for breakfast (scrambled or an omelette) and a half skinless chicken breast with a nice baked yam (with brown sugar) and some spinach. I might also have fresh veggie juice for breakfast and whatever sounds good later. I’m also a celiac and I don’t tolerate normal GF foods. Wheat, barley, rye, corn, oats, rice (most grains) do not work for me. Whereas most celiacs can eat corn, oats and rice I am not able to do so and stay well. So as a result my diet is very limited. Your husband should do well on grains (pasta, oat meal, corn meal, etc). I also eat salads and I use a honey mustard dressing that I can vary. The BASE dressing is 3 tablespoons of apple cider vinegar and 3 table spoons of honey mustard (not gray pupon it has alcohol – read labels). I create variations by using different mustard types (hot, sweet spicy, jalapeno) separately or in combination. I also often add balsamic vinegar. Of course you can also add salt, pepper, garlic, rosemary, parsley etc for even more flavor (to your taste). I use no oil in dressings. You can also use that dressing as a sauce for chicken and fish. It’s all trial and error. My diet is NOT what I’d call bland. I use spices very liberally. Great anti-inflammatory spices are cayenne, chili powder, garlic, rosemary, thyme, oregano, basil, parsley. I also use salt and black pepper. So anything you can whip up using safe foods such as fruits, veggies, grains, legumes (beans, peas, lentils), egg whites, no fat dairy (milk, yogurt, cottage cheese, etc), skinless chicken, white meat fish (cod, pollock, bass, perch, rock fish) while avoiding the use of oil and other high fat stuff and alcohol you should be able to come up with some usually safe, tasty meals.
Not sure where your reply about meals is, but thank you! That actually helped a lot. He only eats when he is hungry. a normal breakfast is generally oatmeal with a little brown sugar and blueberries and dry toast. I have been making batches of soup with fat free stock, loaded with veggies and rice or pasta and then put them in freezer containers so we have them on hand. Love the honey mustard dressing idea! After this last stay in the hospital, I am being very careful what he eats!
Hi Cheryl from what I just read you seem to have a very good grasp on foods usually safe for a pancreatitis diet. You are doing well. 🙂
In 2002 I was in the hospital after a severe motor vehicle accident. While I was in the hospital, a doctor diagnosed me with acute pancreatitis and said that I had had for a while. I was in the hospital for 2 months. I was fed through the IV. Since then I continued to have pain on and off in the upper left abdomen. I have diarrhea of and on. My stools float to the top and I have been noticing an oily film on top of the water. For the past 2 months my weight has been dropping. I am hungry all the time. I feel like I am starving. The gastroenterologist kept telling me that I have IBS with diarrhea. I had a case of bacterial vaginosis a while ago, was placed on Flagyl, and all of a sudden the diarrhea was gone. Since then I just have IBS. For the past 2 months I have been getting weaker and weaker. I have been resting in bed most of the time. Last week my doctor checked my labs and noticed that my lipse level was high but the amylase was normal. Also my CRP was very high ans so was the sedimentation rate. The next day my blood was tested again. The lipase was normal again but the gamma gt and alp were elevated. I had an ultrasound donr but there was no swelling of the pancreas. I went to the hospital and had an endoscopic ultrasound and a MCP done. The MCP indicated there was a small stone in the liver but the endoscopic ultrasound didn’t confirm that. I am going home soon and still have no idea what could be going on. Any ideas?
Hi Catherine – Sorry to hear you are feeling poorly (probably an understatement). If I understand you correctly while in the hospital for the auto accident you developed acute pancreatitis and the doc said you have signs of having had AP before as well. GGT may indicate liver damage. Increased GGT and Alp levels indicate biliary disease (liver, biliary ducts, pancreas etc). Lipase up one day and down the next with ultrasound showing zero pancreas inflammation is interesting. You are gonna think I’m crazy but you may want to get checked for celiac disease. Celiac disease can cause increased lipase levels and liver enzyme elevations. It can cause all kinds of symptoms. It is systemic and can attack organs (heart, lungs, liver, pancreas) other than the small intestines. It of course causes floating stools with an oily film on the water (it destroys the small intestinal villi). It can cause severe weight loss. AND it can lay dormant (no symptoms) for years then all of a sudden become active after a trauma (car wreck). In it’s latent (dormant) form it can still attack other organs (pancreas, liver etc) and can actually manifest as acute pancreatitis. It’s an easy blood test to either rule it out or in. Hopefully you do not have it – it’s a pain in the butt.
My husband was recently diagnosed with chronic pancreatitis…after being sick for 3 years! how long before that we have no idea, as he was on narcotics. he beat those cold turkey (painful process) he has lost about 50 pounds and is sick daily. They want him to stay on the low fodmap diet, but everything I read says that is more for IBS, and to follow a low fat diet? he has been eating very bland, low fat foods and taking tumeric and grapeseed extract, along with papaya juice and aloe 3 times a day. sadly to say, they put him back on Morphine, so I am not sure what is helping and what isn’t. the morphine dulls the ache, and his appetite is a little better. any tips for us? they make it sound like its not only chronic, but terminal? told him to be prepared to be a diabetic. I am tired, he is tired, the kids are tired. we just need some solid advice from someone who has experienced it! Thanks in advance.
Hi Cheryl – I don’t know how badly your husband is damaged (pancreas damage). IF it were me I’d try to get off the morphine (it’s highly addictive) and use the NSAID Ibuprofen instead. Ibuprofen isn’t addictive and it also fights inflammation (the cause of symptoms) whereas morphine does not. I’d do MY diet. I’d take a lot of grape seed (at least 200 mgs 4 x daily), curcumin (500 mgs 3 – 4x daily) and vit C (1000 mgs 4x daily) as all three fight inflammation. USUALLY once the inflammation resolves so do symptoms and continued damage. Diet is extremely important. Red meat, pork and other high fat foods simply don’t work. Meals should contain no more than 5 grams of fat with a total daily fat intake of no more than 25 grams. Some people can’t even tolerate that much fat. Of course y’all have to do what you think it right. If you guys have questions just ask. I’ll do my best to answer 🙂
we know that all to well. he was on it before for over 2 years and it was pure HELL for him getting off of it. he can’t take Ibuprofen anymore, it really does a number on his stomach. He was really at his wits end to ever consider taking it again, but the daily pain for the last couple years was brutal. I know he feels like he is dying at times. So as far as the diet, in eating lowfat you also eat pit fruits?? apples, peaches etc? we are keeping it very lowfat with everything and no red meat or anything. I believe the GI doc said his pancreas was about 90% non functioning 🙁 I really appreciate you answering 🙂
Cheryl – you are most welcome. Is your husband on creon? I would think if the doc said his pancreas is 90% non-functioning that he’d have put him on enzymes. If not you may want to inquire about that. Yep I eat all kinds of fruits (apples, oranges, bananas, cherries, kiwi, strawberries, blue berries, watermelon, grapefruit etc) I stay away from avocado and coconut (high fat).
Hi Cheryl,
Reading your comments your hubby is suffering a lot. Just wanted to mention what helps me with pain. Firstly, as we know, minimal tiny amounts of fat and no alcohol at all, must be adhered to. Supplements are great to get inflammation down. But for pain control I use amitriptyline. I take 50mg at night. In fact when I was very sick back in March-Sept I took 75mg at night plus endone as needed. My Dr is satisfied that I needed this much, some Drs only give 5, 10 or 25mg of amitriptyline but I’d like to see them endure pancreatitis and see how they would cope with insufficient pain meds. The maximum dosage is 150mg per night but I’ve never gone anywhere near that dosage. Amitriptyline is extremely useful in blocking pain, helping with nausea and helping me to get a good solid nights sleep something that can be hard to achieve when one is so ill. I have every intention on reducing or coming off amitriptyline when I feel my inflammation is under control and my other health issues are figured out. I haven’t had endone for many months though. Just thought I’d mention this as it might help you guys cope better and feel not so over whelmed by it all.
As for diet it’s a very slow process because I’m guessing your hubby’s inflammation is very substantial. But you can make really great vegan fat free recipes. Ie vegetable rissotis, bean dishes with spices curries etc, stir frys with veges beans and rice, etc. But I remember when I was so ill vegetable soup was the most I could tolerate. The clear ensure is a good idea. You will know when hubby can handle more food.
God Bless.
Stacey.
Hi Stacy. As I read this we on our 4th day in the hospital. Staff put in a feeding tube despite the fact his normal GI said it wasnt cost effective :/ ugh. They have now started him on clear liquids. We are going to see if they will write him a prescription for ametriptoline, as he was on it before for sleep. He has lost so much weight! Another thing he notices is his emotions have been really all over the place. But just getting hydrated and some nutrition has helped a lot! I so appreciate you taking the time to reply! Will keep you posted!
He is, he takes 4 with meals, and 2-3 with snacks or smoothies. we have been making him smoothies from ensure to try and put some weight back on him slowly. Good to know I dont have to cut out the fruits and veggies that the fodmap diet restricts. that never made any sense to me why the GI doc would say stay on that after he was diagnosed. It will be much easier to feed him! Dinner was scrambled egg whites and white chicken with a little spinach and chives. (no oil used at all) sounds disgusting to me, but after what he has had to eat for so long it was gourmet! LOL. I did hear that MTC’s oils, as found in coconut oil is a safe way to gain some weight back, But I am not taking any chances with any oils! again. I appreciate it. I am sure I will buging you again soon!
Cheryl check your ensure bottle – the only ensure that is safe is “Clear.” All the rest have oil in the formulas. I’d stay away from MTC oil. ALL oil is pure fat. Ask anytime.
Oh boy…see why I dont like listening to the Doctors 🙁 Thank you!!!
You’re welcome 🙂
Hi, I’m currently still trying to get a diagnosis, as all of my lab and imaging tests so far have been negative (CT, MRI, ultrasound, chest xray, upper endoscopy). I’m planning to ask my GP for a referral to get an EUS done, and in the meantime I want to do a trial of Creon.
However, I read on another page of yours that you should stay away from pork products, and Creon is made using pig enzymes. Do you think it would still be ok to take it?
Jon – Creon seems to be the exception and gives many with lots of damage some very good help in the area of digestion and symptom relief.
Thanks THG, I’m currently trying Creon 25 with each meal (1 pill of 25,000 units). I’m planning to ask my GP to get the Creon 10 pills as well to play with the dosage. I think it’s helping with my stools (more firm), but I haven’t noticed a great improvement with pain yet. I’m hoping it will the longer I use it and maintain a strict diet. Is there an ideal dosage that you noticed works for you?
Hi Jon – I can’t tell you an ideal dosage of creon because I have never used it. I use over-the-counter (OTC) pancreatic enzymes which are far less potent, yet still effective.
Also, I was wondering if you’ve come across any research that shows early or minimal change chronic pancreatitis as being reversible. My hope is (if this is what I have) that I can catch it early enough where the pancreas can heal over time with proper diet and supplements (i.e. enzymes).
Jon, yes I have. In fact acinar cells (they produce the enzymes) are known to regenerate under good conditions. I hope you have a happy, blessed new year 🙂
Thanks THG, that’s good to hear. Do you have any links to studies that i could read?
Also hope you have a great new year!
Hey Jon here is one article. Have a great New Year 🙂
Has ajyone tried CB1 for weight gain? It came up in a forum but I amnleary of anything. It wont let me paste screen shot if ingreients. But if anyone knows let me know. Thanks in advance!
Hi Cheryl – I have never used CB1 for weight gain. Maybe someone else has.
I wish it would let me paste a screen shot in here of the ingredients. If you have a chance, can you search CB-1 for weight gain ingredients and see if anything raises a red flag to you?? and sorry for all my previous typos. was on my phone and I have fumble fingers 🙂
Hi Cheryl – isobutylamides a main ingredient in CB-1 is a cannabinoid which comes from weed (pot). I guess they use the chemicals found in pot to give you the “munchies” lol I’ve had people tell me that weed helps their pancreatitis symptoms. Whether it does or doesn’t I have no personal knowledge on the subject. I didn’t see any glaring red flags.
Hi health guy. Since my attack in August I got sicker and sicker and now my mom got pancreatitis from a gallstone which was caused by a tumour on her liver. Everything is just a mess. Please can you tell me if you developed digestion issues after your attacks. Whats happened to me seems unique. I developed EPI after one acute attack. I don’t understand how this is possible. The dr says my pancreas was burnt by the attack which left scar tissue and the scar tissue is preventing enough enzymes from being made. The food in my intestines is not being digested properly and the bacteria is fermenting the food and it is creating gas bubble in my intestines which move and pop all day, its terribly uncomfortable and painful. The Dr says the gas is destroying my intestine because of the kind of gas it is. I now have lower abdominal pain together with my pancreas pain. Im on Tumeric, Grape seed extract and a vegan diet. I was from the start but nothing changed. The burning pain only subsided last month but I still get terrible pains on and off. I fasted for days on end in the beginning but it never helped. I don’t understand how I could have this much damage.. does everyone walk away with digestive issues? My mom is in the same boat, her body is not digesting food correctly. How can there be a disease like this. Im not sure how long I can live this way, literally.. how long before I need surgery on my intestines. I am on Creon and it makes no change. Even if I Take 10 of them with my meal. Im just wondering what happened to you and how you’ve managed to absorb nutrients all these years and not have damage to your body? During my attack, I felt bitterly ill but I had no other complications like Cysts or necrotising pancreatitis. I don’t smoke or drink at all. I am getting sicker and sicker wit more and more symptoms and gastro problems since this started.
Hi Candice – yes I have digestion issues. I’ve had celiac disease for years, since I was a kid, yet not diagnosed until I was 55. It was likely the cause of my acute pancreatitis since it does manifest as pancreatitis at times. So my small intestines are trashed. Then the pancreatitis so I couldn’t tell you which one causes the most ongoing digestion issues. To me it doesn’t matter because neither are curable by the medical community. So with God’s grace I live with it. Like St.Paul I have a thorn or two lol 🙂
I find it very weird that fasting, diet and supplements do not bring relief so I gotta ask some questions.
1) When you say fast are you talking nothing by mouth but water or what? Fasting rests the pancreas and is the only good thing most ER/hospital staff do for the patient.
2) How much grape seed extract and Turmeric (curcumin is better) do you take daily?
3) Your vegan diet – zero fat or do you cheat?
4) Ibuprofen? Yes/No – If yes how much when you take it?
5) Creon is extremely powerful – Prescribed dose? How much do you actually take at each meal? If you are taking more than prescribed that could be a problem. That stuff is potent.
Thank you so much Heath guy.
My scans are not showing damage yet. But because I am so sick and I can pin point my pain perfectly, I have one of the best GI Dr in the country now and h has explained that without a doubt the only organ that is where my pain is that could cause these specific symptoms.The dr says it will eventually show.
I have a specific point that feels like a stitch constantly and he says thats the tail of my pancreas. My pain is not constant more like sporadic but it is everyday. Sometimes I feel like Im having a heart attack. Had cardiologist check heart out and heart is fine. After tons and tons of research I am think the bloating and extreme discomfort I have that comes with it is caused by SIBO ( small intestinal bacteria overgrowth which is in turn caused by Pancreatic insufficiency. I have been prescribed 2 creon per meal (25 000 each) thing is they precribed as though I eat 3 times a day and I eat more often than that. I weigh 85 -90 pounds on and off and if I only eat 3 times I will die from malnutrition. when I fast I typically have nothing. Not even water. And I have become even more extreme with the diet than ever before, I now follow the gerson protocol ( my cold press juicer came today)- yey. The gerson protocol is a cancer treatment for extreme healing of patients who are usually on their death beds from cancer. It sounds extreme but actually it kind of how we were meant to eat. ( ZERO fat) just high nutrition from raw and cooked fruit and veggies and oats fro breakfast. SInce you are a born again Christian you might enjoy following this guy too. He is doing a course for 10 days on nutrition and supplements. In his journey of healing. http://squareone.chrisbeatcancer.com/spiritualhealing-7
That specific one is about allowing the Lord to heal you and having Faith. It only shows for 24 hours so by the time you see it the next one might be up. Its worth a watch though!!
To answer your questions about the grapeseed, extract. I take 3 500mg a day. AT one stage I took 6. I also take 2 tumeric pills 3 time a day. One is organic tumeric 500mg and the other is 250mg tumeric and 250mg cayenne to help with absorbtion of the tumeric. Also 2000mg vitamin C. I cannot believ that one acute attack could destroy my body this much. Were you ever able to stop the bloating? If you are celiac too I assume you are technically also living off just veggies and fruit?
May I ask why the acinar cells cannot regenerate? I dont understand why the Lord would make it possible for a persons enzymes to accidentally destroy itself and then not make room for the organ to fully heal. Now my poor mom is so sick too. Only hers is gallstone related which is liver related. Im drinking tons of water and things like milk thissle to heal my liver too. Things are just getting worse. Im not sure how typical it is for things to get this bad from one attack. My lipase levels were only checked on day 5 of my attack and it was 576 but I immediately recognized my moms symptoms and she was tested right away with a level of 1065. Shes in a lot less pain than I am though and already on a low fat diet. Just struggling to understand how I was just minding my business one day and my pancreas just got so sick and now its causing other issues. My vitamin levels are low despite being on a multivitamin to:(
I try to only use Neurofen ( Ibufrofen when I cant take the pain anymore. I take 800mg sometimes 3 times a day for two days.
The pain I have is odd though, its rarely lasts for hours but everyday it is there whether sharp shooting pains or dull pain. I have another EUS next monday and again in 3 months after that.
Hi Candice – I have a little knowledge of the Gerson therapy, in fact, I have Gerson’s daughter Charolette on video on one of my pages or posts I just can’t remember which one lol
About the supplements all I can suggest (up to you totally) is to increase them until you see/feel results. Sometimes it takes a lot. By the way black pepper helps curcumin/turmeic absorption best.
I eat veggies (all kinds except corn), fruit (most), egg whites, legumes, fish, skinless chicken or turkey. I’ve finally located some flours I can use to create some bread, I hope. I have to figure out exactly how to make it without oil and yeast.
From what you have said “Just struggling to understand how I was just minding my business one day and my pancreas just got so sick and now its causing other issues.” So I’m guessing nobody knows why your pancreas tried to eat itself. One thing I can tell you for absolute certain is that a pancreas does not wake up one morning and say “I think I want to kill myself.” There is ALWAYS a reason, a cause. All someone (your doc) has to do is work at discovering it. Trust me there is ALWAYS a cause.
Originally I thought I had possibly injured it (my pancreas) with a football injury. So did the doc who diagnosed me but since I was finally diagnosed with celiac disease I have looked hard into that condition and found all kinds of things doctors (most anyway) have no clue about. It is a systemic autoimmune disease which means it attacks any organ or tissue it wants, not just the small intestines. I also found out that undiagnosed celiac disease can and does present as pancreatitis. Who would have thought? Most doctors have no clue yet I can cite a couple case studies and one medical site that clearly states celiac disease can and does manifest as pancreatitis. So …
Again there is ALWAYS a cause. IF you can find that cause and either eliminate it or suppress it you may find a little more wellness.
I’m listening to Chris and he’s right on the money.
I also wanted to add that due to all these symptoms I have been diagnosed with Chronic pancreatitis but the drs all maintain that I am very rare because one attack NEVER causes this. Yet here I am. 6 months later and still very very sick
By the way Candice I am sorry you are having such a rotten time with no relief and about your mom as well. I will pray for you both and yes, unless the attack is severe it is usually rare for CP to set in, at least according to the medical community. If your scans show scar tissue in the area of your acinar cells (they produce enzymes) that is probably enough to have caused CP. So the CP diagnosis is probably correct.
Hi- so this is my 3rd time writing to you since I just found this blog because I am so shaken up by your blog. Don’t get me wrong it is amazing but my entire life that I’ve dealt with numerous AP attacks because I have hereditary pancreatitis. I thought there wasn’t much to be done and I would just have to deal with AP. Now I feel like I need to make this huge life change and I had no idea. I have never wanted to live in ignorant bliss but wow this is eye opening and scary. Anyway in the past made some minor changes compared to your blog- I knew how much alcohol I could have and frequency and types (no white wine, champagne etc) and same with foods. I can’t over eat on meals, etc. I can’t always drink- has to be monitored etc. if I drank more than 2 nights a week- definitely AP. It can’t be combined with a new diet or rich foods- vacation is code for ER. But I didn’t really believe the doctors when they said limited alcohol. Because they had told me so many other things about pancreatitis that turned out to be untrue- I lost my trust in them and just made constant modifications in my life that have worked to me to minimize pain and AP using trial and error. Surprisingly I haven’t been hospitalized for AP since 2006 but I have had attacks but I refuse to go get morohined up for 4 days or worse. I deal with AP at home- fortunately they have been several years apart- suprisingly really after comparing my diet to your blog. I have a daily aloe vera juice routine, licorice tea and drink a lot of water. I have come across your blog because after years of managing AP attacks, or so I thought since I didn’t think I could stop it, I now seem to just get frequent tenderness or a heart burn like sensations and no other way to really describe that I can feel my pancreas is bothering me. I know precisely what it feels like. I haven’t been diagnosed with CP but I am now wondering if this is where I am or am headed after so many years of AP (at least 15+ years maybe earlier but wasn’t diagnosed until I saw my cousin curled up in pain one day around age 20 with an AP attack and I knew from the way she looked and acted that is what I have had several times before. Sure enough the next attack I took my self diagnosis to the ER and with shock and reluctance the doctors diagnosed me). I just didn’t realize until really the past few days that I could never have another AP attack again but this is a major major life overhaul and I am just stunned. I am glad of course but also just so surprised there is a path but a hard one (I mean easy compared to surgery and death) but anyway… I also don’t think I understood that each AP attack has severe consequences and not just a path in my otherwise long life. I admit I have not been kind in anyway to a pancreas and have it okay with managing the attacks but as I get older and I think pregnancy and stress and age and the many AP attacks my body isn’t doing so well. I mean I am healthy eater by any standard except for folks with malfunctioning pancreases… I eat lots of healthy fats, low grains etc. Currently I am having some pain, tenderness but I am pregnant so I have to be careful about limiting food groups and also supplements. Anyway, long story is what are some early symptoms or what is the diagnosis for CP? Is there less pain and more frequency than AP? Do people with CP still get AP? I guess I am worried I’ve minimized serious AP attacks but never considered CP until your blog. Thanks for all the helpful, passionate information. I have not found anyone as knowledgeable in person or on the internet on real advice that is founded in experience and fact with someone who knows what it’s like.
Christine – I do NOT want to scare you. I only wish to inform so that you can take evasive action and hopefully dodge the big bullet that sometime comes with hereditary pancreatitis. I quote “The estimated cumulative risk of pancreatic cancer to age 70 years in patients with hereditary pancreatitis approaches 40%.” Read scholar article (cited by other articles 859 times). All I can do is to urge you to pay attention to detail. Stop drinking alcohol completely. Learn what to eat and what not to eat to avoid further damage and progression of possible CP. I can not stress enough how imperative it is that you change course (diet) and begin a supplement regimen that helps eliminate inflammation while possibly keeping PC in check by actually killing rogue cancer cells (no promises, just some articles from the NIH that look intriguing).
1) The natural compounds and their ability to target cancer stem cell – In the recent years, several compounds were found have the ability to kill cancer stem cells, such as salinomycin, curcumin, sulforaphane, a novel gemini vitamin D analog(BXL0124) and so on. Read complete article here
Curcumin and sulforaphane can be purchased in capsule form or both can be eaten. Curcumin is/are the curcuminoids found in the East Indian spice Turmeric. Sulforaphane is found in brocolli, spinach, cabbage and other greens. The highest concentration seem to be in broccoli sprouts.
My anti-inflammatory cocktail I use (grape seed extract, curcumin and vitamin C) is important. Each ingredient is used for a reason and I would, in your case, add sulforaphane. I am an avid proponent of getting most of these via food sources because there are other phytochemical compounds in those foods that work synergistically yet one can not eat enough of those foods to get the high doses needed to successfully protect us from pancreatitis and cancer. I can’t even say that large doses will be 100% effective in all people because they won’t be but they won’t do harm and will make it harder for cancer to grab on. THAT is why I use them. They, with diet, do keep me well (pain free). And I am 70% sure they also protect me more than just diet against cancer. And I have an increased risk of pancreatic cancer due to CP. I have an increased risk of intestinal cancer, including lymphoma, due to celiac disease.
If you have questions feel free to ask. I’ll do my best to give or find you the answer.
Reading your reply to Christine… Please follow Chrisbeatcancer.com if you dont already, you are both so knowledgeable in your own field of disease its amazing. He spoke of all the best best food to protect against cancer: Top of the list- garlic, Leeks, Amla berries ( order powder from amazon) all other berries, yes turmeric and BROCCOLI SPROUTS- goodness knows where I am going to get this in South AFrica. Never thought I would want to immigrate as much as much do now. Drink Gerson green juice as much as you can stomach each day. And drink hippocrates soup as often as you can in the week. Stay away from toxins as much as you can including mercury in your teeth fillings and Tuna. This is free advice from Chrisbeatcancer for those of us with high risk diseases like pancreatitis. The best thing we can do is try and prevent. If it comes in a box dont eat it and prefeably stay away from animal products aswell. If you can eat organic do that too. For your Celiac disease try slippery elm, it soothes the intestines.
Yeah he has some good knowledge of both cancer and God’s Word. Turmeric (curcumin) and sulforaphane (broccli sprouts) kill cancer stem cells which are the cells that tell the other cancer cells what to do and how to do it. Thanks by the way. I appreciate your thoughtfulness and the link referral 🙂
Candice – Ok, being skeptical because most people do not give out free information I started digging and I found Chris’s “squeeze page” or “lead capture page.” Now I work online for a living. So I know what capturing leads is all about. It is usually a way to give out free info (the best online marketers give out great info) and then suck you in for the big ending which is usually the need to buy something or join something (a site for example on a monthly or yearly payment basis) in order to get the secret (the solution). I may be all wrong. Chris may be a wowie zowie cool guy and never ask for a dime but then why the lead capture page? Why the powerful video that pulls on the heartstrings to get you to give him your contact info? People ONLY build “lists” online for one reason. To make money, period. So be careful. This may be one of the better snow jobs in history. Or he could simply be a a really great guy.
No for sure, Health guy, I agree with you there. Chris beat cancer is now his job. He speaks and people do hire him for public speaking. If you watch his survivor videos, lots of the people on there have met him there and him their stories. He does use Chris beat cancer to make a living. I kind of understand that. he had a radical life change and he obviously quit his usual job and now uses his knowledge to make a living. Im very weary of people myself. SO I totally understand what you are saying. The videos are only free for 24 hours. Thereafter if you want to own them you must pay for it. Which I also understand… Im not buying anything from him though. Just interested in the info:)
Ah ha! Ok, he is selling each module (if you want to continue) for about $10 bucks each. I KNEW it – I think he is using Christianity and God to make money. Whether that (my assessment) is wrong or not I have no clue. Whether it is wrong from God’s view I have my own opinions. You have to make your own choice. He has a link on the first video where you can buy his modules.
Hehe, yes he is. Im sorry lol. But all 10 modules are free first. The trick is that he keeps it up for 24 hours. Only todays module is about Christianity. I have a a huuuge issue with people ‘selling God’ to make a profit. But I was quite surprised that he dedicated a module to the Lord. The rest of his modules are about healthy eating, detoxyifying your enviroment, supplements etc.:) I think tomorrows one is about supplements.
No worries Candice 🙂
Thank you so much for the helpful information. I literally know no one that has a real clue about what works or on a long -term basis. I think I just needed some honest and helpful information– but I think it’s probably good for me to be scared. I have a GI who recommend an endoscopy annually to check for pancreatic cancer. However, she didn’t at all explain the risks I read about here..but I have to delay anyway. She didn’t at all make any nutritional recommendations… I am not sure your thoughts on endoscopy for this purpose? My uncle and grandmother both died from pancreatic cancer and I have a sibling and 2 cousins also with hereditary pancreatitis… My only problem now is that I am pregnant so I really can’t do the supplements now, but I definitely will. I am having a mild flare up now because of stupid tamiflu which I googled AFTER I started to feel ill. And looks like there are reported cases of tamiflu and pancreatitis. I can’t abstain completely from eating like I normally would because I am pregnant…and I get sick with the hormones on an empty stomach. Do you any info you have on how to decrease inflammation without supplements while still eating some? I know no fat… and I don’t have a juicer yet.
Christine you are welcome. You said: “I have a GI who recommend an endoscopy annually to check for pancreatic cancer.” THAT is probably one of the best things you could do to keep an eye on it. The pregnancy issue is certainly a valid reason to be cautious. I am NO help in this area, sorry.
Thanks. Do you have a suggestion about ordering of foods as easiest to digest? I saw you have celiac too which I can’t imagine. But you’re the second person I heard that from. I met with a nutritionist a few years ago- not just an RN- but a phd in chemistry with years of ecoerinace. She told me she thinks most cases of pancreatitis are caused by undiagnosed celiac but it’s widely misunderstood or believed.
Hi Christine – foods easiest to digest and safest for those who have pancreatitis are organic juices and zero fat foods or those with VERY low fat. The lady with the phd may be right. With the advent of super seeds (to create more bushels per acre), GM foods which usually contain roundup (poison) to kill bugs and fungus we who have to buy foods from stores are literally swallowing foods that were never designed (by our creator) to be eaten. Just a theory of mine (for various reasons), not necessarily correct lol.
Hi, can you give me some ideas on how to cook food without oil? Is there are way to saute vegetables with oil, for example? Thanks
Hi John – first you need a good non-stick pan. Then you add veggies (e.g. carrots, celery, onions, etc) using a teaspoon of water or vegetable broth. Add water or broth as needed while you finish cooking the veggies. You can fry potatoes the same way. The secret is to use only a small amount of water or veggie broth so you don’t “steam” the veggies. Once you get the hang of it the veggies will come out well.
Also, I recently tried taking grape seed extract (Whole Foods brand) and it caused some pancreatic pain. Have you ever heard of this happening and do you know why it might be happening? Also, is a small amount of sugar in this diet OK, like a teaspoon of honey twice a day for allergies, or a healthy natural foods small cookie? Thanks
Hi John – You asked “I recently tried taking grape seed extract (Whole Foods brand) and it caused some pancreatic pain.” No, I have never heard that about grape seed extract. Too much when starting out can cause issues (nausea, etc) from detox. But I have never heard of it causing pancreas pain. Sugar, even though it is inflammatory, doesn’t seem to bother me or at least I have never been able to link it directly to any symptoms or problem.
Thanks. I had trouble with enzymes at first too but have since adjusted to them now with no problem. I have one other question for you, and I understand completely if you are not able to or don’t want to answer it. I seem to be able to tolerate moderate amounts of avocados with no problem (as opposed to coconut milk, which causes alot of problems). If I am eating fatty things (vegetables) with no significant pain, digestive problems or other symptoms, is it safe to assume that they are not causing further damage to my pancreas? Or could the damage be happening without any symptoms? Complicated question, I know, and I appreciate any info you are able to provide. –John
John – to be really honest I am very conservative in regards to food and fat consumption. I look at what I tolerate and work from there BUT here’s the deal … Many people will be able to tolerate more fat than me or someone else who is reading this site. I have noticed that some have difficulty tolerating 5 grams of fat per meal while others are able to tolerate a lot more. IF one has chronic inflammation (CP) that chronic inflammation can damage more pancreas tissue BUT if one does not have CP or is healed and can tolerate more fat per meal, well, it is up to them. Everything is up to the individual and what they think is best for them. My whole goal is to avoid more damage and enjoy a symptom free life for as long as possible and I am willing to eat less fat in order to do that. I also don’t want to have people think that fat is safe because for many it will not only cause a few mild symptoms but could end in causing acute pancreatitis and a lot more damage. So, it is difficult for me to say – “yeah go ahead, don’t worry” because this condition can be volatile. I know that is a vague answer but it is the best I can do.
Hi, I was diagnosed with minimal change chronic pancreatitis a few weeks ago. And I thought “minimal change” was a good thing, gave me hope it might be reversible. Is that not the case?
The cause is unknown, I don’t drink or smoke, and I didn’t have any acute attacks (yet). Just on-going pain and double/triple lipase levels.
One theory the doctor has since I had gallstones (gallbladder removed a year ago), I may still be producing sludge which is irritating to the pancreas. He put me on Uradisol for six months. Ever heard of treatment with Uradisol?
Thank you.
Hi Ris – I’ve heard of a couple people seeing what was originally seen via scans disappear after a year or so of correct diet and the use of certain supplements (grape seed extract, vit c and curcumin (if no sod or gb issues). I can’t tell you that will happen. Minimal change CP is simple CP that doesn’t meet all the normal criteria yet scans show some change (damage). There is usually no cure for CP whether MCCP or reg CP. YET, I would guess that MCCP is easy to control or get under control, even put into remission (no progression).
Uradosol is a bile acid made into a prescription drug used to treat gallstones and certain type of liver disease (primary biliary cirrhosis). Whether it is successful in either scenario is controversial. But the therapy may prove beneficial for a time.
Hi Health Guy,
You helped me a lot in the past, and I thought these papers I dug up might interest you, or your readers.
Some of them are just abstracts, but I’m looking around for the full papers and I’ll post em if I find em.
Citrate… works for kidney calculi I thought… why not pancreatic?
http://www.ncbi.nlm.nih.gov/pubmed/1439314
‘Dissolution of pancreatic calcifications with oral citrates in a woman with chronic idiopathic pancreatitis’
There are several others in the ‘similar articles’ sidebar of the article – for some reason I can’t copy and paste the links/titles into the comment box so I had to write that one out, thought you’d find it interesting/might be able to share it with the followers of your blog.
Thanks again!
Be well,
Sean
Hi Sean – cool! Thanks for the article info. It could definitely be helpful to folks with calcification.
I’m currently suffering from something. I’ve had 2 diagnosed AP. I had an ercp done that also increased pain. in 2019 I had bubbly feelings if I ate something fattening. I usually fasted for two days and was ok. However mid-June it didn’t go away and I began having IBS symptoms. No one really told me how to deal with it, or said that it was an issue. I assumed dr’s would tell me things. Nor did they tell me to avoid high concentrations of fat. Here I am now suffering in mild dull pain. They think it might be microscopic pancreatitis. I have no colon but they can’t say definitively it is or not. My trypsin is high, but not amylase or lipase. The drs also said don’t completely remove fat. He did agree I should try to determine what causes the flare but he said some days you won’t know. Four days straight and no huge amounts of rib pain underneath my rib area w/ limited meat/fat. Yet here I am limiting protein and fat and for the last four days my pain is gradually decreasing. My only issue is weight. i’m 5’2 and 111/113. I do need to start gaining weight or they will do something drastic. I can’t fast too long since I have no colon. I already tried that but didn’t read your diary. I wish I had at the onset and maybe in less pain and more weight. Have you heard of BCAA’s or MCT oil? I’m told they do not require enzymes. RATS appear to show no increase of amylase or lipase w/ BCAA’s. I’m going to add it to my almost zero fat protein drink. I’m still debating on MCT oil. I’m all about prevention. Wish these stupid DR’s would put a picc line to give my gut time to heal and not let me loose tons of weight. I’m petrified I don’t want to loose another organ. I’m trying the best I can. I’m going to try quinua and zero fat yogurt next. They do have a new drug that’s approved in japan but not here yet called ni-03 that can stop the enzymes from coming out. So frustrating they don’t have it here yet. There’s also some pilot projects on projectcure for drugs in the next 8 years to help treat those of with it. I’m super scared. The facebook groups have me petrified of what my life will become but the dr’s assured me that I can live with CP as long as I stay w/ a healthy diet, abstain and don’t smoke. I barely drank, smoked a few times in college but that’s about it. You said it took a few months to get this under control?? That gives me hope. I hope that’s w/ me. I may try to go more vegan if I can tolerate quinuo or lentils. All in moderation. But I will say if I have a few pieces of chicken I didn’t have pain but if I had a large breast of chicken then I was in pain. With the IBS I don’t know if I can do all grains, that’s my only issue. Right now it’s a light dull pain if I put my ipad on my chest, and I have some lung pain but it’s not the large dull pain that i was having. I have an EUS next week for them to double check it.
Hi Meow – I think I recognize you from the BP support group. I am sorry you are having issues and have already lost your colon due to IBS or cancer? Yes it is sad that Japan has been using NI-03 with success, especially since it blocks trypsin, which seems to be your problem. As soon as they (Big Pharma) can figure out how to charge horrendous prices for the drug and they grease the FDA’s palm enough it will probably be here in the States. I have never used MCT oil. Others supposedly have and lived. I’m interested in knowing what the EUS discovers. You said: “Four days straight and no huge amounts of rib pain underneath my rib area w/ limited meat/fat. Yet here I am limiting protein and fat and for the last four days my pain is gradually decreasing.” If it is working I’d keep doing what works. I’d also go buy grape seed extract, curcumin and vit C and begin taking those two to three times daily. Buy the smallest dose you can find in curcumin, and 100 mg caps in grape seed extract and 500 mg caps/tabs in vit c. And Ibuprofen. That cocktail should help eliminate any inflammation which will help resolve your symptoms as well.
Hi, I have no colon and had 2 AP attacks spread apart by 4 years. No one told me to change my habits. I didn’t drink or smoke though. I might have minimal cp. they said they can’t diagnose it. I’m really struggling. I’m trying your diet. I can’t full fast do to my condition but they gave me nerve blockers to deal with it. They are willing to let me identify triggers but I’m almost to having a flare every other day. They are going to do an eus next week to look at it. I told them it’s getting worse by worse each week. This started in June. I was hospitalized for a week and let out. They couldn’t find anything so they thought it might be sibo. I have a flutter feeling before I have a flare. No one can explain what that is. I’m not sure if I can do a full fast of no meat. I’ve only eaten chicken and fish. I’m guessing that might be the triggers now but don’t know how to eat that many calories. I’m already down to 113/115 and 5’2. I’m really scared. Your blog gave me hope but the more and more I try to limit what I eat I can’t see anything change. They did an ercp on me the second bout. I didn’t know the complications. I had my gallbladder removed the first episode. I’ve had these small flutters when I consumed fat. So I would fast. Now I’m stuck in pure hell. I can’t seem to get it to budge and I’m loosing hope real quick. How long did it take you? I’m trying frozen fruit and smoothies but I know they aren’t organic. I can’t afford all these foods non organic. I’m really scared. Truly scared.
Hey Kat I answered your comment under Meow.