Vegetarian diet for pancreatitis sufferers


#22

I have the same problems with soda,juices,sugar& milk. I do organic mosly and carbs. I cannot do red meat at all. Moderation on the chicken and Turkey. Basically the pancreas doesnt like any food. Seems to be working very hard to digest anything I get very tired after I eat. small portions seem to help. I am under a size zero now. I was also told to try ensure. Cant do any of those ingredients either. Very discouraging not sure how to gain the weight. I feel like the more I eat the more I lose. plus I am in pain. My downfall is anything chocolate and I definately pay for it.

People dont go to an overweight person and say oh what happened why have you gained so much weight. They dont seem to have any problem coming up to me and grilling me on my weight loss… like I can help it.

The dr. gave me enzymes but he told me He didnt think they would work for what I have and so far he is right. I go back to see him in a couple of weeks. the pain I have is not just my pancreas seems to be all over my stomach area. I had my gall bladder removed 7yrs,. ago it was functioning at zero percent. apparently, this pancreas problem affects the other organs and stresses them to. So I am pretty much wondering what is going to go out next.

I know what you mean about family not wanting to hear about the complaints they cant relate and they dont want to hear it! I am so glad we have eachother here we can relate to what were all going through and it has been a great support group.

Keep the Faith and God Bless,
MKgirl


#23

oh sweet girl, just hang with us, we TOTALLY understand! do not let anyone tell you its all in your head or do not go that route thinking that either, i think most of us have been there. so just do not visit that! it is a very mean and cruel illness, but we just have to keep going and pray for a cure and relief ! my tummy hurts all over also, they removed 80% of my pancreas as it was dead(hard like leather) and a mass behind it the size of a grapefruit,my spleen went with it i became diabetic and now catch every virus known to man, my pain is pretty much constant and tons of nausea, i just take tranadol loratabs and lots of promethazine for nausea. i wake up very sick everyday and get a small window of half good time for about maybe 2 hours then it starts in for the afternoon and evening. i just had my 15th ct scan friday and all remains stable, so my surgeon is thinking stent placement for some relief…??? who knows… also on the eating thing just eat what you can when you can, i had lost 70 lbs at the start of this but have put some back on so now my weight is not an issue, some of the girls here use carnation instant breakfast, maybe you could try that, i drink glucerna chocolate only, it is a drink for diabetics, but often lots of crackers chicken soup help ! hang in there and keep in touch, we are here with you ! hope for a pain free day for all !

julie


#24

I just joined this group and can’t believe how many of your comments resonate with me. I can’t believe how many of my symptoms and experience are common to others because I kept thinking I must be doing something wrong, especially with figuring out what to eat. I feel better just reading that other people have had similar experiences and that it’s not just my imagination or inability to properly manage the pancreatitis. After struggling for several years I was diagnosed at Mayo last summer with pancreatic insufficiency with the CKK test to measure my digestive enzymes (my pancreas makes less than 10% of normal). They said this is likely due to idiopathic pancreatitis. I was put on high doses of enzymes, (Viokase 16). I had to return to the Middle East where I work a few days later so I will have to go back and get an EUS at some point.
I have also struggled with weight loss being underweight (also 5’4, size zero) and finding it hard to gain weight. Thought it would be easy once I started on the high doses of enzymes but it still is hard. I was hit by a car while biking a few weeks after my diagnosis and suffered a broken hip so dealing with my pancreatic issues has been secondary for the last few months, but now it’s more central as I’m trying to focus on gaining weight and have also been having a lot of pain recently. I find the painful attacks are episodic and cannot figure out what triggers them. It’s good to hear what others have found they can eat without pain. I eat very little fat but find many other foods can also cause pain. I’ve been basically vegetarian for many years though I eat fish and have made an effort to incorporate white meat turkey into my diet because I wasn’t getting enough protein. Now I’m reading that protein is also hard on the pancreas. The strange this is that one day a food can be fine for me and another day it causes problems. I would appreciate any suggestions about what foods people have found work in terms of not triggering pain and also getting sufficient nutrition.

Thanks


#25

MJS,

Welcome to the group. I wanted to let you know that we do care for everyone here.

Some suggestions for your diet. Some people won’t do this because of the artificial ingredients, corn syrup, etc. But it has helped me put on weight and keep it on. Drink Ensure or a generic. It is packed with vitamins, minerals, calories. It isn’t too bad if you drink it really cold and it does come in chocolate and strawberry and vanilla. You can also make smoothies with it. Those taste pretty good. Also Carnation Instant Breakfast is very good. It is also packed with good nutrition. There is a company called Purity Products that makes powders from veggies and fruits that you mix in with juice or water. I also use this for nutrition. It is kind of pricey, but you can go to their website and see if this is something that you might like to try. If you call them you might be able to get a free sample. I did that before I started buying it to see if I could tolerate it.

If there is anything else that you need information on this is the place to be. Just remember that each one of us reacts differently to the disease. But we do have lots of good info to share.

Keep the faith and God Bless,
Vonnie


#26

Thanks for the reply. It is good to be a member of this group and read about experiences and their suggestions. I am somewhat limited in what I can get easily because I live overseas. I do have a ton of powdered Ensure because a Dr. prescribed it and they got it for me, but I really don’t like it. I mix some in when I make smoothies but can’t seem to drink it straight. However, I may have to try it. Haven’t tried the Carnation yet. I’m hypoglycemic so tend to avoid these drinks that are mostly sugar, but maybe I should try them during the difficult times when I can’t eat anything else. I eat a lot of power bars which I can usually tolerate well and of which I brought back lots from the States. Vegie powder sounds interesting. I can’t get it here, but will look into it.

I am still struggling with figuring out this disease and the cause/ effect of how I react to foods or what triggers problems and definitely struggling with trying to gain weight. Finding this forum is really helpful though so I hope others keep posting their ideas, suggestions and experiences.


#27

MJS,

The veggie powder you order online. It would probably be too expensive to mail. Where are you? Which country?

Vonnie


#28

Yes, it’s probably too expensive to mail, but perhaps next time I’n in the States. I’m currently in Saudi Arabia.


#29

So it would be difficult to get what you need there. I’m sorry. If I could think of a way to get it to you I would.

Vonnie


#30

MJS,

We have similar experiences. (Also we’re the same size.) I was diagnosed at Mayo this year through the CCK test. I call it the torture chamber test. I guess you can relate. But it was necessary. I’ve had an EUS, but it didn’t show nearly the abnormalities they would expect for having the CCK and the stool fat test be so bad.

I think my CCK results showed more functionality than you have, but not a lot. It sure does explain a lot about what we’re going through, doesn’t it, when we see how much the pancreas has shut down. They’re going to repeat the EUS, and maybe do a biopsy, when I go back this summer.

As a vegetarian, are you opposed to egg products? I’ve found that egg white powder is my best way of getting protein. I also use soy powder, but the egg white powder doesn’t have that heavy, bitter taste that soy can have. I buy a brand called Vitol (it’s unsweetened) from amazon.com and have it shipped to me. It’s maybe $25 for a big canister that lasts me quite a while. I add it to cereal, soup, baked products, just about anything. It has lots of high-quality protein and isn’t offensive.

Because I don’t tolerate most sweeteners very well (sugar, splenda, etc.), I sometimes mix in some white stevia powder (a tiny bit goes a long way) and a little cinnamon with my egg white powder. Adding that to cold or hot cereal, rice, cut up fruit, anything that’s going to have liquid in it or added to it, gives a pleasant slight sweetness without tasting too sweet or bothering me.

One of my fall-back eating strategies when I really need to rest my pancreas, am not tolerating much, but I’m not so bad yet that I need to stop eating altogether, is to make fruit and protein smoothies. Any fruit plus egg white or soy powder will work. I use a lot of berries, maybe a banana, the protein powder, a touch of stevia and some cinnamon. You can add fruit juice instead of the stevia if you tolerate juices.

If I’m using dark berries, I’ll add a handful or two of spinach (fresh or frozen) to the blender. Sound weird, but the berries mask the green color and you absolutely can’t tast the spinach, and it adds a lot of nutrition.

This is my personal answer to Ensure, what I’ve developed for myself since I can’t tolerate the Ensure-type products and was desperate.

I blend several batches and store in the freezer. Then I take one out and nibble at it with spoon, slowly as it gradually unfreezes. This is really more of an Ice than a Smoothie, but you could make it more in a smoothie style.

This has almost no fat (unless I add soy milk or almond milk when I’m tolearting some fat). Lots of antioxidants, which apparently our pancreases need a lot of, nice and anti-inflammatory, and all that good, easy protein.

I hope and pray never become intolerant of fruits and vegatables.

Like you, I had also heard that too much protein was hard on the pancreas. Maybe that’s the case for some people, and I totally agree that we’re all different and have to figure out what we tolerate ourselves. But when I broght this up with my doctor, she said no, I should not worry about getting too much protein. Instead, I should get more, that’s how I would build myself back up. She keeps asking me, are you getting enough protein?


#31

When I was in the hospital, I got nothing oral for almost 2 weeks. Then we tried water for a few days to see if I could tolerate that. I had an IV for hydration. They told me that everything including water makes the pancreas work. The goal in the hospital is to give the pancreas a break & make it do as little work as possible.

My strategy at home for flare ups is to stop eating and drinking for 12 hours. Then start on water. See how I feel the next morning. If I can’t tolerate water, then I do go to the doctor/ER. You have to stay hydrated! If I can tolerate water, then I move to no-fat vegetable broth. I have this is dehydrated cubes and in boxes/cans in the pantry. I also move to unsweetened herbal tea. I try to keep to no caffeine whatsoever, so I don’t even chance the decaf tea or green tea. Anything that spicy, like Mandarin Orange Zinger or Apple Cinnamon. If after the 2nd day, I either get better or worse. Worse = go see Dr/ER. Better, then on day 3 I start adding very small meals keeping as much to zero fat as possible. Mashed sweet potato (no butter, no milk), applesauce, toast, banana, soup, etc. By Day 4 I’m usually just fine. But I’m better off than many of you, so you may have to baby yourself longer.

I can’t stand the Ensure either. So instead I use powdered Whey. I found a special mix for a health food store works quite well. It has less than 1 g/fat and, 1 g/carbs (less than 1g/sugars). It does have 18 g protein. It is called Show Me the Whey. You can order it on-line. Solgar makes a Whey To Go powder with the same statistics. I had a third brand but I forget what it is. I add the powder to frozen fruit and a bit of apple or orange juice in my blender to make smoothies.

I have found a food journal to be very helpful. Somethings bother me immediately, some take longer to get my attention. I have identified a base of foods that I know I do okay on. I am very careful about my fat intake - when not in pain I am at 15-20 g/fat a day. When I am in pain, it is as close to zero as humanly possible. Since someone (I think Teresa) mentioned the protein, I started paying attention to that. It helped to lower my protein levels to less than about 40 g/day . I also found that yogurt bothered me - there are a couple of papers suggesting that some pancreatitis patients should avoid yogurt. Hot spices bothers me, this is very frustrating for me since I am really tired of eating bland foods. Even a small spoon of salsa on a big bowl of black beans is too spicy for me. You might try rotation diets - see sites or books on food allergies & rotation diets. I found that if I eat carrots more than every 4 or 5 days cause my pancreas to become slightly upset with me.

Who knew the pancreas had that much control over our lives. I’m still trying not to piss mine off again! This some of what works for me. I hope it helps.

Wishing you all pain free days ahead!

–Laura


#32

WOW-I just wanted to say thank you for the Good advise!!! I thought it was just a fluke deal when I ate carrots-mmm, celery does the same thing to my pancreas…guess I better limit how many I eat a week!!! sometimes that is all I eat in a day is 2-3 carrot sticks or 2-3 celery sticks, mmm better stop that huh? Ok Thank You Again…Sending my thoughts and prayers your way…Big Hugs…Mrs. Barb/Barb


#33

Hi Vonnie,

I am happy to share any knowledge I have to help. Been doing lots of research and reading. If your not used to vege style than it can be tough to stay on track. Even found that my local grocery(publics) has a website that talks about nutrition and has recipes for vegetarian dishes. I also recommend a book a friend shared with me, called Skinny Bitch. Strange title but it really educates a person and its a funny book to boot it’s helping me to stay on track. Plus the results are worth it. Try sticking to organic everything I know its more expensive but I think its well worth it to stay away from pesticides. Which causes cancers. When were sick were more prone to these things. Also, soft plastics of any kind such as: water bottles, microwaving with plastic wrap or containers. I have a friend who is an oncologist deals with cancer patients. So I have received lots of great tips. I hope this helps and good luck on your store venture.

mkgirl


#34

I have read all of the responses and it is clear that what works for one, does not work for all. I have had chronic pancreatitis for 20 years and had a Whipple Procedure in 2003 which improved my condition dramatically, but not completely. I am fortunate to have a very caring and knowledgeable physician, who is an amazing Doctor and Director of Pancreatic Studies at Harvard Medical School. Over the years the types of food and and my GI responses have changed. The one food I have no problem with ever has been sushi. Whenever I eat it, I get no indigestion and have no pain or other issues.

In December of 2009, I had a pancreatitis attack while at a meeting in Atlantic City, like most of you, you learn how to treat yourself and do not run to the hospital for every panceatitis attack. I had a business trip scheduled to Tokyo within 48 hours of my attack and my physician advised against traveling to Tokyo. I did not listen and had a remarkable experience in Japan.

I have never felt better eating anywhere in the world than I did in Japan. I ate everything that my hosts put in front of me. I ate Kobe beef, it was superb and did not affect me. At home, I cannot eat beef or digest it. I ate sushi, sashimi, soups, salads and fruits and never felt better.

What did I learn? The Japanese and most Asians eat small quantities of food, it is extremely fresh, does not contain preservatives, is low in fat and sodium and the soups are broth-like and the vegetables are not cooked, but rather put in the broth at the time of serving. I even had some Saki with my meal. I never felt as well as I did that week.

I make a lot of Asian/Japanese/Vietnamese type rice noodle soups and eat smaller quantities and more frequent meals if hungry. I get fresh locally caught wild seafood and not farmed.

Every morning, I make a fresh fruit smoothie made with strawberries, blueberries, fresh lime juice, bananas, pineapple and other fresh fruits blended with some Greek yogurt or Activia yogurt. I usually make enough for a few days and the fresh lime juice acts as a preservative. I do not use all of the same ingredients and usually use two or three fruits with the yogurt and fresh squeezed limes. I digest it well and it helps me keep adequately nourished.

As I said, my experience is that each must find what works best for them and even that changes with time. The only constants are low fat, small quantities, fresh ingredients and a lot of seafood. As I said Asian simple dishes and soups are the best, but the one thing that I have realized as much as I miss it is you cannot have alcohol on any type of regular basis. It is the one thing that is like pourly acid directly on your pancreas. A small quantity of a good wine is all that you may be able to get away with, but even that if you can do without it is better.

The Whipple Procedure damaged a lot of nerves and consequently, I do not have a lot of feeling from the incision line to my umbilical area, but that has been a blessing in disguise. Good luck to all and do not give up trying different foods, you may be pleasantly surprised.

Additionally, I have been taking Creon 24 (used to be Creon 20) for 20 years and take about 12 spread out during a meal. I found that by judging the amount of statorrhea are experiencing determines how many pills to take over the course of a day. I currently average 40 pills a day taken at meals and with snacks. In the category of what is good for one is not good for all. I have no problem digesting pork products which may be because the pancreatic enzyme pills are derived from the pancreas’ of pigs. I also can digest most types of lettuce, with the exception of ICEBERG LETTUCE. It is like poison to my small intestine and causes pain, belching and GI distress for hours. No other type of lettuce has the same effect. Even if I ingest a small piece of undetected ICEBERG LETTUCE, I know it within minutes. It is amazing, I can eat habanero peppers and Louisiana hot sauce, but do not give me iceberg lettuce or a lot of beef… live, learn, adapt and keep on plugging away!!


#35

And since I seem to be contrary just by nature, I just stopped being vegetarian 15+ yrs due to my CP. It wasn’t a happy decision, but it was better than being in pain. And I needed to eat something.

I am on still on a very restricted fat (still about 10 g/day) and have just started adding medium GI foods. My insulin and my fat digestion seem to be on-going issues. If I eat right, I’m okay. But eating wrong, I know pretty soon. It is not as touchy as it used to be. I found I couldn’t do the soy protein (including tofu and soy-based meat subs) for months after my hospitalization. I could not get enough protein without going back to white fish and turkey breast. I can do a very limited amount of salmon (2-3 oz max/day), as long as I watch the rest of my fat intake.

I do lots of polenta and beans. I ran out of polenta and decided to try some rice this week. I made steamed arborio rice (med GI, whereas brown rice is high GI) to go with black beans. The rice has blown my fasting blood sugars out of their normal range. I’m trying a week without rice and then another experiment to confirm.

I haven’t had any problems with any vegies that I didn’t have before the CP. Onions went off my menu in 2000 when I can cancer. Broccoli went out in 2003 when it started tasting incredibly bitter. After the CP: No avocado (too much fat). As for fruits, no melons of any kind or papaya since they are high GI.

I hope it helps you. I hope something helps


#36

RKG,

Wow our experiences are very similar. It does help just to know that others have comparable experiences and symptoms. I agree about the torture chamber test, but it was definitely worth it as it gave such valuable information and as you said it helps explain a lot.

I even also make smoothies with fruit and soy powder or sometimes non-fat soy milk, freeze a bunch and eat them in ice or semi ice state. Lately the fruit I tolerate best is papaya (I get a different kind here than the Hawaiian ones in the States. I don’t like those, but the ones I get are very easy to take). Thanks for the egg white protein suggestion (as well as your other ideas). That sounds like a better alternative. Because I live overseas it will be expensive to ship here, but if I can’t find it locally, which I doubt, it may be worth it. I’m not opposed to eggs or any other food. I haven’t eaten red meat for years, but just don’t tend to eat much other meat probably because that has been an adaption to the digestive issues. I think I should eat eggs more but I don’t like them so the powder sounds like a good way to get the protein. I also can’t do the Ensure and most sweeteners. I don’t usually use sweeteners or juice but will try the stevia sometime.

I also appreciated what you wrote about Viokase on another forum. It sounds like our initial prescriptions were the same. I like the idea of taking 4 before a meal whereas they had told me initially to spread them out before, during, after. It seems like it would be easier and actually make more sense to take them first. And perhaps I need to consider taking more. I haven’t yet tried Nexium. I plan to try it, but have had a lot of problems in the last week and have been afraid to try it. I’m hoping this will resolve and then I’ll at least try it. Do you take a proton pump inhibitor with the Viokase?

I’m very interested in your doctor’s advice. It’s good to hear what she says about protein because it makes sense that that will help my body rebuild and gain weight, which is a definite goal for me too. Unfortunately my doctor here doesn’t seem to know too much about pancreatic insufficiency or have any experience with it. Are you still consulting the Drs at Mayo or your local doctor?

I also have a question. A lot of posts mention having to stop eating altogether, but for more than a short period what do you do? I worry about this because I have so little reserves anyway, so try to keep up at least some sort of intake. But there are times when eating just makes things worse. Do you have to go to the hospital to get an IV?

Thanks again for sharing your ideas, experiences about what works and the information from your doctor.

MJS