A reader recently directed me to the blog of another pancreatitis sufferer, Sherry. It tells her story of CP, which began after eating too much junk (on top of underlying susceptibility due to cystic fibrosis) and landed her in the hospital for a week. The blog also gives her very thoughtful coping tools for living with CP, which she calls “10 Ways to a Happy Panky.” They are spot on and well worth a read.
Sherry also includes recipes for dishes that are low fat, but inventive and appealing. One nice surprise was chili dogs and fries with carefully picked ingredients.
Kudos to Sherry for creating this helpful and inspiring site! Check it out at http://happypanky.wordpress.com/.
The last few months have seen the emergence of a number of instructive videos on chronic pancreatitis. Many come from the National Pancreas Foundation, which has a YouTube channel called “The Animated Pancreas Patient” with a host of videos, including animations, interviews with patients, and doctor commentaries.
A brief overview of chronic pancreatitis (nothing new to the long-time patient):
The link between alcohol, smoking and CP:
Foods and drinks to avoid when you have CP (fairly basic…see our Diet & Nutrition page for some more detail. Note the reference to coffee, which still seems to be an open question):
One patient’s progression of the disease: (One I did not find particularly encouraging, but the doctors do not suggest that it is typical)
Great to see this patient education coming available…hopefully more to come.
This past week’s post —Nutrition for Chronic Pancreatitis: Some Startling New Insights — received a lot of attention and comment (largely on the Facebook communities for pancreatitis, which you can find on this page). Much of the feedback regarded the statement in the Journal of Practical Gastroenterology’s article stating that ““Low fat diets are neither palatable nor necessary and are not recommended.”
I reached out to one of the authors of that article, Sinead Duggan, a research dietitian with Trinity College of Dublin who specializes in nutrition for chronic pancreatitis. She was kind enough to respond in detail. Her comments, set forth below, are very helpful and instructive — not only on the issue of fat intake, but all of the points highlighted in the earlier post. Our thanks to Ms. Duggan for taking the time to provide this further insight.
From Sinead Duggan, BSc., co-author of A Practical Guide to the Nutritional Management of Chronic Pancreatitis
I read your article and noted the areas that you find controversial.
Regarding the fat issue, I realise that many physicians still ask patients to follow a fat free or low fat (by this I mean as low as 20 g per day) diet. I don’t believe the evidence supports this. Not least, remember that not all fats are ‘bad’, some like mono-unsaturates and omega 3 poly-unsaturates are very important for health.
However this should not be misinterpreted as a recommendation to follow a high-fat diet. Patients with chronic pancreatitis clearly must ensure that they do not take high fat foods, especially in large portions. For example, adding cheese, oil, butter, cream or heavy sauces to food, or taking fried foods, or junk food.
However, the ‘normal diet’ consumed by many ‘healthy people’ is very high in fat and not recommended. So to compare patients with chronic pancreatitis to the general public then, yes, they must reduce their fat intake.
Perhaps as importantly, they must take moderately sized meals (avoiding large portions at each time).
For those who report flare-ups or severe pain after high fat foods I would say they should certainly avoid those foods, however, I’d also be interested in what their normal diet is like, their enzyme use, portion size, typical symptoms etc. Assessment by an [Registered Dietitian or “RD”] would help.
The most recent studies have suggested that many patients do not take adequate enzymes. They must be taken appropriately, and with adequate acid-suppression meds if applicable. Regarding the maximum dose, this is very high as you pointed out, but most patients will never reach this (or ever need to), but it is good to have a maximum level nevertheless to reassure patients that they may increase their enzyme intake if they need to.
As you know, the pancreatic enzyme supplements contain enzymes which digest protein and carbohydrate, not just fat. Apart from symptoms of fat malabsorption, patients with chronic pancreatitis may suffer from bloating, wind, and general discomfort after eating (many patients will attest to this) and this may be in part due to carbohydrate malabsorption. The undigested carbs enter the large bowel where they are acted upon by the resident microflora. This causes release of large amounts of gas leading to the symptoms above. A very low fat diet will undoubtedly be high in carbohydrate (you have to eat something!) Importantly, pancreatic enzymes can also help to reduce these symptoms.
So to summarise, a moderate fat intake (not high fat, not fat free) along with careful control of portions, and correct / appropriate usage of enzymes, should help to alleviate the symptoms resulting from this condition.
As mentioned, assessment by an RD should help patients reach a balance of foods, enzymes and supplements. This is not an exact science and requires trial and error. Remember that all patients are different: they have a different degree of severity, different co-morbidities (diabetes, heart disease), some may be underweight and some overweight or obese, and therefore, monitoring by a pancreatologist and team (including RD) should help to make sure that the patients individual situation is considered.
You also mentioned fibre in your piece. Restriction of fibre would only be required where enzyme supplementations appears to be inadequate after checking for appropriate use, adequate acid suppressions, dietary intake etc. We know that dietary fibre can bind the enzymes so it is something that could be tried in the context of dietetic intervention. It may help some patients, if their fibre intake was particularly high, for example.
Briefly regarding type 3 [diabetes, or “DM”], this is a recent classification of the DM that accompanies pancreatic disease. It is an acknowledgement that it differs from type 1 and type 2. For example, in type 3, patients tend to have hypos (like type 1), but milder hyperglycaemia (like type 2). It lies somewhere in the middle in terms of classification. Patients shouldn’t be alarmed at this newer term. Their Pancreatologist will undoubtedly be taking all their clinical situations into account for management.
If you suffer from chronic pancreatitis, diet and nutrition rule your life. Most experts agree that diet can affect your symptoms and that nutrition — or really malnutrition — is a concern as the disease progresses. Beyond that, the advice on nutrition is scant, and the experts disagree as to many specifics, often leaving patients to negotiate their diets without clear guidelines. (See our page on Diet & Nutrition for the best guidelines we’ve found.)
A recent article in the Journal of Practical Gastroenterology offers some new insights into the issue of nutrition for CP. (“A Practical Guide to the Nutritional Management of Chronic Pancreatitis,” published June 2013) The article starts by noting that most of the research into nutrition for pancreatitis focuses on the acute form, and that in comparison research into chronic pancreatitis is “older and of lower quality” — but of critical importance. The authors call nutrition a “problem area” for CP, with effects on quality of life and very serious risk factors.
The article provides a good analysis of the tools available for assessing pancreatic function. CP can eventually lead to loss of pancreatic function, which can in turn lead to malabsorption and eventually diabetes. But the article then goes on to reach some conclusions that I found significant…and at odds with some of the conventional wisdom. Some of the more startling conclusions:
Patients with pancreatic enzyme insufficiency “tend to be undertreated, and [pancreatic enzyme supplements] underprescribed.” The authors recommend starting with 40,000-50,000 U of lipase per meal and 10,000-25,000 U per snack and increasing the dosage from there — up to a limit of 10,000 U per kg of body weight. For a 150 lb. person (68 kg), that amounts to a whopping 680,000 U.
In up to 50% of cases, chronic pancreatitis can evolve into a specific subclass of diabetes: Type 3. The authors contend that this is often misclassified as Type 1 or Type 2, but that Type 3 has its own unique patient characteristics and its own management principles (described in a table in the article).
As CP progresses, the need for nutrition increases. The resting energy expenditure is 30-50% higher for advanced chronic pancreatitis patients compared to normal adults. The authors recommend that such patients increase their caloric intake to 35 Kcal per kg of weight. (This only translates into 2,380 calories for a 150 lb. person, which seems in the normal range.)
“Low fat diets are neither palatable nor necessary and are not recommended.” This seems to contradict the recommendations of many experts — see the excellent sources on our Nutrition page. Instead, they recommend moderate fat intake with enzyme supplements to promote digestion. They contend that there is no evidence that vegetable fats are any better tolerated than animal fats. They also caution against too much fiber if enzyme supplements are used.
New Note: This last conclusion is indeed controversial, and has already generated strong feedback to this post. Most doctors and patients (though not all) believe that fat taxes the pancreas and causes flare-ups. Their assertion requires clarification and/or backup, which I will try to find.
The authors propose an algorithm (flow chart) for assessing and managing nutritional issues for CP, which seems sorely needed and seldom used. As important, however, the article points out holes in the current research and some prevalent misconceptions, both of which cry out for more study.
The article is available in full here.
Further note: I was able to reach one of the article’s authors, who responded with some helpful clarification. You can read the author’s comments here.
Most medical sites put fruit on the recommended list if you suffer from pancreatitis. (See, for example, my favorite nutrition guide, from Stanford Hospital). That made a recent news story rather surprising: Actor Ashton Kutcher was hospitalized with what he described as “pancreas problems” after following a fruit-only diet, which he was following to prepare (via emulation) to play Steve Jobs in the new movie Jobs. He claimed his pancreas levels were “completely out of whack,” and that he was doubled over with pain. Sound familiar?
In the wake of the story, some nutritionists opined that the fructose, or simply the carbs, in fruit overworked his pancreas. For example, a nutritionist on Psychology Today’s web site reiterated her belief that Jobs’ diet contributed to his death from pancreatic cancer. An article on U.S. News & World Report’s site called “Ashton Kutcher’s Fruitarian Diet — What Went Wrong” cited several experts on the dangers of such a diet, and included a dietitian’s advice that we stick to two pieces of fruit a day. Others argued that Kutcher must have had it wrong, that “despite Kutcher’s experiences, there is no evidence that a fruit-only diet leads to pancreatic problems and it is certainly not a risk factor for pancreatic cancer” (from a Huffington Post piece).
Given the pancreas’s role in secreting insulin to control glucose levels, it seems plausible that too much fruit could tax the pancreas. There is also a study on the effect of eating fruits and vegetables on the incidence of acute pancreatitis that found that fruit consumption correlated slightly with increased risk. Anecdotally, I found that I began to crave fruit (and sugar more generally) as my chronic pancreatitis worsened…whatever that means.
Some guidance on how much and what kind of fruit to eat would be extremely helpful. If you know of any, or have experience with one extreme or another, please chime in.
People with pancreatitis are told to give up quite a few of the major guilty pleasures: Drinking, smoking, steak, pizza, french fries, ice cream, and essentially any other food or drink that isn’t low fat and ridiculously healthy. (You can find a collection of advice on nutrition here.) With all those temptations to fend off, most of us would prefer to keep our coffee (or in my case, iced tea) ritual/addiction intact…unless there is a clear reason to give it up.
Some very reputable sources put caffeine on the restricted list. According to a fact sheet put out by the Pancreas Foundation on Hydration and Pancreatitis, “Caffeine and alcohol should be limited, as they are diuretics and promote fluid loss and can also stimulate the pancreas.” The National Digestive Diseases Information Clearinghouse (part of the Department of Health & Human Services) counsels that “drinking plenty of fluids and limiting caffeinated beverages is also important.” (Similar advice is on the New York Times health website.)
On the other hand, the Nutritional Guidelines for Chronic Pancreatitis put out by Stanford (the most comprehensive set of recommendations on diet I’ve seen) put coffee and tea in the “recommended” column. And while caffeine is known to be a diuretic (meaning that it depletes the body of fluids), studies have found that the diuretic effect lessens significantly for regular coffee or tea drinkers. (See a New York Times web article on whether caffeine causes dehydration and a Mayo Clinic posting on the same subject.)
There has been some research on the subject, and it may be good news for coffee drinkers. A study done by Kaiser Permanente back in 2004 looked at how smoking and coffee affect the risk of pancreatitis. Smoking definitely increases the risk of getting pancreatitis — no surprise given the unanimity of opinions on the matter. But coffee was found actually to decrease the risk of getting pancreatitis very slightly. (See an abstract of the study here.) Another journal article stated that the abnormal chemical signals that can trigger pancreatitis (and that are increased by alcohol and biliary disease like gallstones) can actually be inhibited by caffeine (abstract here).
These studies don’t seem to discuss whether people already suffering from chronic pancreatitis will do better or worse with caffeine. Given these findings, though, and the doubt cast on whether caffeine really dehydrates, there certainly doesn’t seem to be a strong argument for giving it up entirely. If you’ve heard differently, or had direct experiences, please comment.
February 2014 addendum:
I did some personal experimentation, and found that drinking caffeine does seem to bring on pain within about an hour. I have therefore cut out caffeine entirely — painful for me but not as painful as pancreatitis. This is anecdotal, and how you react to various stimuli when you have chronic pancreatitis seems to be quite personal…but I’d suggest that sufferers do some experiments themselves.
Part of the gospel for treating acute pancreatitis is to stop feeding orally for some period (usually in the hospital, with nutrition provided intravenously), followed by a clear liquid diet. Those suffering from chronic pancreatitis may also have been directed to follow a clear liquid diet during a flare-up to allow the pancreas to rest.
If you’ve ever been on a clear liquid diet for more than a day or so — and I have, a good dozen times when dealing with flare-ups — you know that they can be very disruptive to your life. It is nearly impossible to get the protein and other nutrients you need. After three days, I end up weak, irritable, and with aches and pains. Being productive, much less happy, is tough.
Apparently recent research casts doubt on the advisability of the clear liquid diet. One study compared a clear liquid diet to a soft diet for patients recovering from mild acute pancreatitis. The conclusion was that “in patients with mild acute pancreatitis, a soft diet as the initial meal is well tolerated and leads to a shorter total length of hospitalization” than a clear liquid diet. (Read the PubMed Abstract) Another study concluded that a full solid diet “is safe and result[s] in a shorter length of hospitalization” than clear liquids or a soft diet as the initial meal for patients recovering from mild acute pancreatitis (PubMed Abstract). Both studies utilized randomized trials and were published in medical journals.
If you are directed to go on a clear liquid diet, it may be worthwhile to call this research to your doctor’s attention. I did, and was advised to try a soft diet instead. A soft diet can sustain you and give you the nutrients your body needs, so it can make a meaningful difference.