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Discussion:
Digestive Enzymes
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Hello I'm new to the group and need lots of help. I have been suffering along time alone and no one believes that I am sick because the doctor's don't know what to look for or I just haven't been able to find the right doctor. I have seen now 3 Gi doctor's and this last one thinks that I may have chronic pancreatitis which I thought I had back in 2008 and maybe as early as 10/2005. I now have many more strange symptoms, severe dry mouth, thirsty,dizzy, legs ache, nutritional deficiencies (vitamins B1, B12,D,E,K,Folate, CoQ10, Serine) strange film on the surface of the toilet water (?mucous/?fat), pain in abdomen throughout the day and infrequently severe mid abdominal pains in the early morning, difficulty sometimes falling asleep, severe weight loss (very bony) I used to weigh 175 in 12/07 and now I weigh 120 pounds, night sweats, and the list goes on. I am barely hanging on for my life. One of my doctor's is a Family Medicine/Holistic doctor who saw me last year 2/09, after I had my gall bladder removed in 12/08 because the HIDA scan showed it was not functioning, decided to have me start eating some ground flax seeds since I was not eating anything with fat in it. I wasn't eating anything with animal protein or sugar either as these items bothered me. I had indigestion also. 2/09,That's when I had this strange thing happen in the mid abdomen at the end of the breast bone that felt like I got the wind kicked out of me and I started to sweat profusely and this lasted for 3-5 minutes then went away then came back an hour later same place, same intensity then came back 20 minutes later same thing then came back a half an hour later then went away!! That's when my doctor's for sure thought I had SOD. Any way this holistic doctor wants me to take these plant digestive enzymes that will help me to digest my food and get nutrients. 2-3 hours after taking them I get this burning pain in my abdomen. Why?? Does anyone know? I'm concerned that they're bad for the pancreas/liver. I have so many things wrong with me it's not funny. The new GI doctor wants to do an MRE with secretin to rule out chronic pancreatitis. What the best way to find out if person has chronic pancreatitis?? Thank you so much for your help.
Posted on 06/02/10, 03:25 am
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Reply #1 - 06/02/10  8:07am
" I have kind of similar symptoms to what you are experiencing, my GI said that the MRCP with Secretin injection was the best tool to use but many have said the ERCP was the best but it has risk of throwing you into a pancreatic attack. Have you doctor take a very simple fecal fat in stool exam - this way they can determine if you are not breaking down your fat and put you on prescription digestive enzymes .. I would lay off any herbs & flaxseed (high in fat) and try a high carb low fat diet. Alot of pasta and rice, and just eat a very little chicken or fish if you can stomach it. I hope it works , this does drive you crazy after a while. "
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Reply #2 - 06/02/10  4:39pm
" Thank you for your help...Do you have Pancreatitis? Do you or someone else affiliated with this support group have a lot of experience with this disease. I just want to talk with someone about all of my symptoms I've had over the past 5 years.
I am so overwhelmed with everything going on I don't know what to do. I'm so uncomfortable lately. Last night I had the worst dry mouth, tremors, sweats and pains and couldn't seem to fall asleep. Night time is the worst! This am I awoke with burning pains in the mid abdomen and also under both ribs. This morning I ate hot brown rice cereal with lima beans, no low fat yogurt or ground flax seeds or Vit D liquid like I usually do. Have you ever had any problems with Vit D. The first time I took it a month or so ago I had this terrible pain going across the entire upper right side of my abdomen, where the liver sits! I have a severe Vit D deficiency. When I go outside for 5 minutes in the sun I can actually feel something moving across the Right upper abdomen and have this pressure feeling in the same area. Weird! Wasn't sure if this was related to the liver or the pancreas or whatever?
The first week in April I had eaten a slice of turkey sandwich meat at night and during the night and the following day I had right flank pain which made me think that I wasn't breaking it down and thought maybe it was related to the liver but now I think it's the pancreas. Not sure though. I pretty much eat all carbs and have a problem with bacteria and feeling like I have too much sugar in my body. I eat vegetables, beans, salad greens, brown rice, spelt bread, quinoa-brown rice-amaranth pasta, lots of vegie soups with beans and rice. I limit my consumption of fruit as I can't handle the sugar rush, but will occasionally eat raspberries. Don't eat many fats at all and from the toilet water it looks like I'm not absorbing it either. I'm concerned that because of my diet I may be heading for Diabetes, and possibly in need of insulin. How do you know if your pancreas has failed to work?
Have you read any of my stories under the Cirrhosis or Pancreatitis support groups? I have quite a history.
It's 130 pm right now and I'm having sweats, dizzy, feel slightly nauseated and have some pains under both the left and right ribs and am burping alot.
Thank you for all of your help and advice. I will try to find out if my insurance has approved the MRCP yet, MRE (I think you knew what I meant from my email)
Keep in touch as I will... "
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Reply #3 - 06/03/10  1:39pm
" Wow, sorry to hear about your troubles. I can identify with many of the things you have listed. Not one of my doctors thinks I have CP, though I exhibit many of the symptoms. A lot of people in this board have similar stories about doctors. I have lost 9.2% of my weight in one year, despite eating 3 meals a day, and Ensure shakes between meals. Every time I have a major attack I drop 4-5 pounds which I cannot put back. So I am just trying to maintain my current plateau.

I have had loads of blood tests (Chem Panels, Kidney Function, Liver Function, Pancreatic Enzymes, etc) that all show normal. I had an EUS, a colonoscopy, and recently a CT-Scan on the pancreas. Again, all normal. The HIDA scan showed a slightly abnormal GB ejection fraction, and I am debating having it removed (getting a second opinion). I would not be surprised if the second GI recommends an MRCP-S. I really want to do everything I can to avoid the ERCP. It has a high (5-10%) rate of complication resulting in acute pancreatitis. Based on that, I would choose the MRCP-S over ERCP any day. And, if I did have to get an ERCP, I woudl probably look at Dr. Lehman at IU hospital in Indianapolis or Dr. Sutherland in Minnesota. Beth Israel in Boston is apparently supposed to be good also.

I may ask about digestive enzymes myself. If there is no risk to the system, then it may help. I no longer drink any alcohol and do not eat red meat. I am eating only poultry, pork, and fish. I am also hoping some day that someone figures out how to solve this disease riddle. I have chatted herein with someone who had the Frey procedure (dudodenum-preserving partial pancreas removal) and is doing really well. Perhaps that will be an option in the long run if things get worse for me, I guess. Maybe in 10 years they will also figure out a way to clone a pancreas from ECM or adult stem cells?

I hope your nightmare comes to an end (like mine).

Peace,
Sid "
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Reply #4 - 06/03/10  2:19pm
" I had my gall bladder removed 12/08 because the HIDA scan showed "0" ejection fraction. After the gall bladder was removed I continued to have problems. Pain after eating fats, animal protein especially. So I stopped eating them and just ate the beans, rice and vegetables. I had another HIDA scan that showed borderline Sphincter of Oddi dysfunction. But when I introduced ground flax seeds into my diet again (I can't remember the last time I ate them) that's when I developed the sudden, knock the wind out of your stomach pains and intense sweating, that lasted for 3-5 minutes. In the ER they discovered elevated liver enzymes and not any pancreatic enzymes.
Definitely get a second opinion. Your gall bladder is not as bad as mine. And I'm sure taking digestive enzymes might help take some of the burden off the pancreas. Eat low fat meals, just do everything in moderation.
I wondering now if what I was eating and drinking caused a tremendous burden on my organs. I did drink alcohol and eat many rich foods. Just wonder? I don't touch alcohol anymore, as of 12/07. I would get this terrible pain the next day after drinking hardly any alcohol. But never severe enough to put me in the hospital. I think I may have had a milder form of acute pancreatitis, not sure though.
Siezeit-yesterday I did not take any plant derived pancreatic enzymes. I awoke yesterday morning with burning under both ribs and continued throughout the day. This is a new symptoms for me. I ate hot brown rice cereal and lima beans for breakfast and had pain in the abdomen. I ate homemade chili with low amount of spice and had abdomen pain. I laid down in the afternoon and this new pain directly underneath my left ribs and breast came on. It started to build and I felt pressure and lasted for a half hour or so and then went away.
I have noticed for the first time these strange needle like burning pains across the upper abdomen through out the day and evening and when sleeping. I even feel a little right now under the left ribs near the center of the abdomen and I haven't eaten breakfast yet. I'm afraid to eat and take the GI doctor's prescription enzymes for fear of getting terrible pains again.
I was wondering because all of this has gone on so long without being diagnosed that my pancreas is dead or almost and is sending enzymes out into the abdominal cavity.
I almost think that the SOD is back and the surgical incision on the common bile duct has grown back and bile maybe backing up and going up into the pancreatic duct.
I have a call into the new GI doctor. Don't know if I should go to a teaching hospital or be admitted to a hospital for further tests. Last year I can't remember how many times I was in the ER before the SOD was discovered. What a nightmare?
I live in Northern California.
I'm afraid to do the MRCP because they inject gadolinium into your veins. Every time I had a test that used dyes, etc. I would get very sick. I think it was hard on the Pancreas/Liver!
Take Care
Marj "
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Reply #5 - 06/04/10  9:08am
" Ditto, Ditto, and more Ditto, But no such tests yet done on me!!
After reading all your post here I am scared to death. I have to tell you all maybe living with my pain is better then what happen to you after your Gallabatter removed.
So maybe NO Doctors know as much as we want them to know? you think? sorry for my downer but after what I read here and all the doctors you all between you have seen it's hard to not think that.

I am learning fast...low fat diet, NO flaxseed or any seeds,
and no red meat. Hope that your body treats you nice back.

I'm overwhelmed with all you have gone thru that it hurts to think about it.

I have no idea until I start to look up what those ERCP or MRCP means?

But for years on n off I have had pains in my tummy on both sides and had kidney stones, and kidney infections, and Pancreatitis!
Has anyone done anything for me no way. I live with it that is why I came here to see if I could learn, and I am learning, and if there was any answers...

So I wish you all the best and hope someone finds good doctors soon, and gets better.
Please let me know but one thing I live in AZ.....the other areas you mention of finding a good doctor is too far for me.

Ruthie "
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Reply #6 - 06/08/10  2:31pm
" Everyone has so many issues, it's sad, and even sadder is the fact I believe most doctors do not know a whole lot about pancreatitis. You have to do your own research and don't take for granted what the doctor tells you is right, and don't stay with any doctor you are not 100% comfortable with.
Back to the topic of enzymes, I have been taking 3-6 pancrease after each meal for 26 years. My other organs are all fine, so they have not caused any problems that I can tell. I don't notice any side effects with them either.
For me, they do not help with pain, but if I do not take them, I have cramping and steatorrhea. "
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Reply #7 - 06/08/10  2:37pm
" Everyone, I had the MRCP with secretin imaging test done yesterday, Monday,the 7th! Not that difficult at all! It's an MRI basically. At the end of the test is when they give you the secretin hormone that they inject into a vein which will show pancreatic function, I believe. Just waiting for my results. I'm getting weaker by the minute. It would seem that I may not be producing enough pancreatic enzymes to help break down my food to get the nutrition I need. I'm waiting for the digestive enzymes to get here tomorrow from Thorne. The product is called Dipan 9-enzymes derived from porcine not plants. Yesterday I found out what was in the plant derived enzymes. Apparently, it comes from some fermentation process of fungal organisms. Never again will I take plant derived digestive enzymes. Do any of you have problems with cultured or fermented food products? I think I have damaged my pancreas more by accidentally taking these things that my doctor had prescribed for me. I'm so fearful of eating or taking anything into my body that I'm getting weaker. My Gi doctor wanted me to take his prescription of digestive enzymes but I'm fearful of all of the chemicals in it for fear that my liver is having problems too! I try not to put any man made chemicals/prescriptions into my body!
I have been eating pasta and low fat diet predominately. Last night I had terrible bloating and sharp pains during the night. Had to sleep upright. Felt like the food was just sitting in the abdomen and this has gone on for years. I have told the doctor's this many times. When will they ever listen? "

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