Pancreatic Insufficiency

[pghkid33]

Hello all,

 

So I have been having some horrible issues over the past 8 months or so. Basically, I have been having loose stools, hand tremors, serious weakness / fatigue etc. that has prevented me from working since December. I've also ended up in the hospital several times with low potassium (3.0 usually).

 

I was diagnosed with Celiac disease in late Summer 2011 with positive biopsie and antibodies. I had been doing pretty well on the gluten-free diet until last summer, when these issues started popping up. I've tried a whole bunch of different things, like eliminating soy, dairy, grains, legumes in general, nuts, nightshades, and none of these eliminations have done much for me. Supplementing has not helped too much, either. I've been using betaine HCL for a couple of months now, thinking my stomach acid was low, but this did not do much for me.

 

Over the past 5 days, however, I have been taking prescription pancrelipase (15,000 units/day), and I have started to see some improvement in my Bms. I've read a couple of studies saying that pancreatic insufficiency is a pretty common condition associated with Celiac. One of the same studies also mentioned that the average dosage for people treated with the enzymes was 45,000 units/day:

Open Original Shared Link

 

There was another study that mentioned 30,000 units/day, but I can't seem to find it.

 

My question is: Has anyone out there found that they had pancreatic insufficiency? If so, what dosage of pancrelipase (common name Creon) were they taking? What kind of success did you see?

I am starting to feel cautiously optimistic that this may be the solution to my ongoing malabsorption, but think my dosage might be too low.

 

Thanks!

[1desperateladysaved]

My son has pancreatic insufficiency and is being treated with prescription digestive enzymes (Brand Pancreaze ingredients:  Lipase, Amylase, Protease).  I have celiac and I am being treated with over the counter enzymes, but I wasn't tested for official insufficiency.  My functional medicine nurse told me that when one suffers from celiac disease the villi in the small intestine gets damaged.  This damage can cause them to fail in their job of telling the pancreas to fire.  The villi can heal as a gluten free diet is adhered to.  Therefore the enzymes may not be needed forever.

 

Do you know if you are low in Iodine?   We thought I might be low in iodine when my thyroid was under par, and when I solved this, my stomach acid became adequate.  There was a lot going on in my case, it is so complicated, but it may be a good thing to check.  I recall reading in my past that the signs of two little stomach acid are the same as too much acid, so if you began problems after HCL you may want to ask your practitioner if you should try without.

 

Dee

[pghkid33]

My son has pancreatic insufficiency and is being treated with prescription digestive enzymes (Brand Pancreaze ingredients:  Lipase, Amylase, Protease).  I have celiac and I am being treated with over the counter enzymes, but I wasn't tested for official insufficiency.  My functional medicine nurse told me that when one suffers from celiac disease the villi in the small intestine gets damaged.  This damage can cause them to fail in their job of telling the pancreas to fire.  The villi can heal as a gluten free diet is adhered to.  Therefore the enzymes may not be needed forever.

 

Do you know if you are low in Iodine?   We thought I might be low in iodine when my thyroid was under par, and when I solved this, my stomach acid became adequate.  There was a lot going on in my case, it is so complicated, but it may be a good thing to check.  I recall reading in my past that the signs of two little stomach acid are the same as too much acid, so if you began problems after HCL you may want to ask your practitioner if you should try without.

 

Dee

Thank you for the reply. No clue if I am low on Iodine, but I have been eating seaweed to ensure I get enough in my diet. The issues didn't start after I started the HCL, I started HCl as a trial to see if it would help. Hasn't worsened anything, but hasn't really helped either. Doc told me to continue with both the HCL and the enzymes. Can I ask what dose of pancrelipase you / your son have taken / took? Like I said, I am seeing some improvement in my BMs after about 5 days at this dose, but have read that others have taken 2x to 3x what I am taking now.

[1desperateladysaved]

You mentioned only Lipase.  Mine has 3 enzymes in it lipase being one of them.   The other two are Amylase and protease.   I use 1/4 tsp. with each meal of my powder. In each 1/4 tsp it contains 72LU lipase.  .   My son's capsule contains 4200 USP units of lipase.  We take these with 3 meals a day.

 

Dee

[pghkid33]

You mentioned only Lipase.  Mine has 3 enzymes in it lipase being one of them.   The other two are Amylase and protease.   I use 1/4 tsp. with each meal of my powder. In each 1/4 tsp it contains 72LU lipase.  .   My son's capsule contains 4200 USP units of lipase.  We take these with 3 meals a day.

 

Dee

Pancrelipase is a mixture of all 3 of those enzymes from what I understand. Was looking for the total units of pancrelipase (commonly known as Creon), not just lipase units.

[1desperateladysaved]

Sure:  here is a link for Pancreaze:  Open Original Shared Link

 

Pancreaze:  (pancrelipase):  I don't see a total, but will list each:

In one capsule:

Lipase 4200 USP Units

Amylase 17,500 USP Units

Protease 10,000 USP Units

 

Genuine N-Zimes DR. Howell's Original Formula  Extra Strength:  In 1/4 tsp

 

Amylase 6800 DU

Protease 20,000 HUT

Lipase 72 LU

Cellulase 80 CU

[pghkid33]

Ahh thank you, pretty informative document. Looks like the starting dose for adults is 40,000 per meal... I'm only taking 10,000 per meal right now, just 1/4 of the starting dose. Been pretty sick this morning so have been discouraged, but looks like I have a long way to go to even get close to the starting dose. Not sure why the doc started me on such a low dose. Damn.

 

Would you say that you felt significantly better after starting enzymes?

[1desperateladysaved]

I was significantly better, but I also began a new program of avoiding foods I didn't tolerate at the same time.  The body is designed so complicated, so it is often very difficult to distinguish what is happening.

 

Dee

[spirit-walk]

pghkid33,

 

Just curious, but do you weight loss as well? I was taking Creon and Zenpep for a few months, b/c my doctor discovered I wasn't absorbing fat. It didn't help me gain weight, and I stopped taking them b/c the prescriptions were expensive.

[pghkid33]

pghkid33,

 

Just curious, but do you weight loss as well? I was taking Creon and Zenpep for a few months, b/c my doctor discovered I wasn't absorbing fat. It didn't help me gain weight, and I stopped taking them b/c the prescriptions were expensive.

Hi, I realize this is a late response, but I just saw your post. I am currently taking Zenpep myself, as I was confirmed to not be absorbing fat with a stool test back in late July. I have been taking Zenpep for about 4 months. I have been having a ton of trouble putting on any weight whatsoever, but it seems that over the past couple weeks I have gained some fat on my face and on my legs. Not a significant amount of weight, but feel like I am getting some meat on my bones at least. I think it's kind of a slow healing process that I have to go through, personally. Honestly, my primary concern hasn't been inability to gain weight, rather, other malabsorption-related issues like weakness, dizziness, etc. Those have started to improve very slowly. Just takes time, I think.

Did you notice that you felt any worse off of them? You may not be gaining weight, but you may find that you feel better while taking them, like me.

 

Also, there is a Zenpep patient assistance program that I have enrolled in myself, given how expensive they are. You may want to look into something like that.

[powerofpositivethinking]

glad to hear things are improving!

 

here's a thread you might find helpful:  https://www.celiac.com/forums/topic/105648-exocrine-pancreatic-insufficiency/

 

I'm currently taking Creon.  Recently, I was excited because my pancreatic elastase testing was initially a 72, and anything under 100 is classified as severe pancreatic insufficiency.  However I just had the level retested after taking a dose of 48,000 units of lipase per meal, and a 24,000 unit dose with a snack.  I've taken this dosing since around April, and my level increased to 414!  Although it's a significant improvement, I'm still in a holding pattern to see if I will continue taken the Creon or not.  I had my fat malabsorption retested at the same time as the pancreatic elastase, however LabCorp made an error and gave me the correct collection container, but then entered the test as the quanitative instead of qualatative fat malabsorption test.  That error caused my sample not to be processed, so I have to give another sample 

 

Last time my fat malabsorption testing showed malabsorption of both neutral (deals with the pancreas, and this led me to asking to be tested for EPI) and total (small intestine/celiac related) fat.  If my fat malabsorption comes back normal on the neutral end, I may stop the Creon, but since my stool still occasionally sticks to the toilet bowl, I'm not sure if it will come back normal yet.  

 

It took awhile for me to be tested for EPI because I am slightly overweight, and putting on weight has never been a problem for me haha  Instead I was taking massive doses of Vitamins D and K because I was deficient in them and despite supplementation, my levels hardly changed.  I was tested for fat malabsorption, and that came back positive.  Then I was tested for EPI and was diagnosed with that as well.  Thankfully my last vitamin testing finally showed my Vitamin K in the normal range!!  Vitamin D is still only a 31, so I've continued supplementing with that.  

 

For reference, I'm a 28 year old female.

 

Hello all,

 

So I have been having some horrible issues over the past 8 months or so. Basically, I have been having loose stools, hand tremors, serious weakness / fatigue etc. that has prevented me from working since December. I've also ended up in the hospital several times with low potassium (3.0 usually).

 

I was diagnosed with Celiac disease in late Summer 2011 with positive biopsie and antibodies. I had been doing pretty well on the gluten-free diet until last summer, when these issues started popping up. I've tried a whole bunch of different things, like eliminating soy, dairy, grains, legumes in general, nuts, nightshades, and none of these eliminations have done much for me. Supplementing has not helped too much, either. I've been using betaine HCL for a couple of months now, thinking my stomach acid was low, but this did not do much for me.

 

Over the past 5 days, however, I have been taking prescription pancrelipase (15,000 units/day), and I have started to see some improvement in my Bms. I've read a couple of studies saying that pancreatic insufficiency is a pretty common condition associated with Celiac. One of the same studies also mentioned that the average dosage for people treated with the enzymes was 45,000 units/day:

Open Original Shared Link

 

There was another study that mentioned 30,000 units/day, but I can't seem to find it.

 

My question is: Has anyone out there found that they had pancreatic insufficiency? If so, what dosage of pancrelipase (common name Creon) were they taking? What kind of success did you see?

I am starting to feel cautiously optimistic that this may be the solution to my ongoing malabsorption, but think my dosage might be too low.

 

Thanks!

[pghkid33]

glad to hear things are improving!

 

here's a thread you might find helpful:  https://www.celiac.com/forums/topic/105648-exocrine-pancreatic-insufficiency/

 

I'm currently taking Creon.  Recently, I was excited because my pancreatic elastase testing was initially a 72, and anything under 100 is classified as severe pancreatic insufficiency.  However I just had the level retested after taking a dose of 48,000 units of lipase per meal, and a 24,000 unit dose with a snack.  I've taken this dosing since around April, and my level increased to 414!  Although it's a significant improvement, I'm still in a holding pattern to see if I will continue taken the Creon or not.  I had my fat malabsorption retested at the same time as the pancreatic elastase, however LabCorp made an error and gave me the correct collection container, but then entered the test as the quanitative instead of qualatative fat malabsorption test.  That error caused my sample not to be processed, so I have to give another sample 

 

Last time my fat malabsorption testing showed malabsorption of both neutral (deals with the pancreas, and this led me to asking to be tested for EPI) and total (small intestine/celiac related) fat.  If my fat malabsorption comes back normal on the neutral end, I may stop the Creon, but since my stool still occasionally sticks to the toilet bowl, I'm not sure if it will come back normal yet.  

 

It took awhile for me to be tested for EPI because I am slightly overweight, and putting on weight has never been a problem for me haha  Instead I was taking massive doses of Vitamins D and K because I was deficient in them and despite supplementation, my levels hardly changed.  I was tested for fat malabsorption, and that came back positive.  Then I was tested for EPI and was diagnosed with that as well.  Thankfully my last vitamin testing finally showed my Vitamin K in the normal range!!  Vitamin D is still only a 31, so I've continued supplementing with that.  

 

For reference, I'm a 28 year old female.

 

Thank you for the response... I am a 23 year old male, should have mentioned that! It's great to talk to someone who is going through something similar. I actually have referenced that thread several times, it's very helpful, thank you for posting all of that research. My vitamin D absolutely plummets if I neglect to supplement, but my levels have been good with supplementation.

 

Have you had any sort of symptoms that you can attribute to your malabsorption? I have been dealing with severe weakness (muscle weakness, easily fatigued, etc.) for quite some time now because of this, and I am not even able to work at this point. My potassium was also dropping for a while after having large BMs, but that seems to have improved. My BMs in terms of frequency, consistency, seem to be improving veerrrrry verrryyy slowly, along with the weakness and fatigue to some extent. The progress seems to be so slow and uneven sometimes (I'll have a relatively normal BM one day, and the next have horrible cramping and diarrhea), that it's hard to convince myself this is even working. I'm also working with a GI doctor that initially doubted I even had Celiac disease, and doesn't really seem to be able to make the connection between Celiac and EPI, which can be frustrating to say the least.

 

How quickly has progress come for you? I have been taking them since June, so about 4 months now. I'm taking Zenpep 100,000 per meal and 20,000 with a snack... I just want my job and my life back!

Thanks

[powerofpositivethinking]

I would look into taking a magnesium supplement for your muscle weakness.  However I would caution you to start out on a low dose and slowly increase to find your threshold because if you take too much it brings on the big D.  I've had my magnesium levels tested various times, and each time they come back normal, however I had deficiency symptoms like muscle twitching and whole body spasms where it felt like I was falling in bed.  Before going gluten free, there was a period where my leg bones hurt all the time...not normal.  I think the important thing to note is that even if you have a normal blood level for magnesium, only 1% of it circulates in your blood, so if you have symptoms, you may benefit from a supplement.  I've told both my GP and GI doctor that I feel better when I take magnesium because it helps my muscles relax and helps me use the restroom.  I'm a former big C sufferer.  They were both supportive that I continue to take it.  I wrote more about it in this thread from May https://www.celiac.com/forums/topic/107513-wonder-mineral-magnesium/

 

This is a good article too: Open Original Shared Link

 

The GNC Super Magnesium pills are 400mg dosage, and now I only have to usually take one or two to get the same effect as four of them and there were a few times I had to take five of them.  I'm happy to say that I did receive my fat malabsorption tests back, and to my surprise and happiness, I am no longer malabsorbing either neutral or total fat!!  I have a few more doses of Creon left, and then it's time to see what happens when I go off of it.  If I start to get random bruising again, that will be a big sign to me that my Vitamin K has decreased again.  

 

Random bruising was a symptom of malabsorption for me.  Here's my progression of Vitamin K.

 

February 2013 <0.13 with a normal range of 0.28-1.78

June 2013          0.16

December 2013 0.18 (After this test, my GI then tested me for fat malabsorption.  I had been taking a supplement that was 1,000 mcg of Vitamin K which is equal to 1250% of your daily value.  I was taking 7 times that amount at his recommendation for two weeks intermittently, and the levels weren't jumping like they should have been.)

August 2014       0.34 (I had been on Creon since April 2014, so I attribute the jump in the level to that.)

 

My GI ran a lot of tests just to make sure the EPI was related to celiac and nothing else.  I think my pancreas was just burning out from years of gluten ingestion, and it does seem that all it needed was a kick start from the Creon.  Going gluten free at first didn't solve everything because of the underlying problem of fat malabsorption and EPI.  After those were discovered, now things have been progressing quickly.  My levels jumped a lot faster than in this study, but I'm also thirty years younger than the mean age evaluated.  Open Original Shared Link 

 

Be persistent because you are your own advocate.  I didn't present with the classic fat malabsorption symptoms, but something wasn't checking out, and now things are moving along.  I hope improvement comes quickly for you!!  

 

 

Thank you for the response... I am a 23 year old male, should have mentioned that! It's great to talk to someone who is going through something similar. I actually have referenced that thread several times, it's very helpful, thank you for posting all of that research. My vitamin D absolutely plummets if I neglect to supplement, but my levels have been good with supplementation.

 

Have you had any sort of symptoms that you can attribute to your malabsorption? I have been dealing with severe weakness (muscle weakness, easily fatigued, etc.) for quite some time now because of this, and I am not even able to work at this point. My potassium was also dropping for a while after having large BMs, but that seems to have improved. My BMs in terms of frequency, consistency, seem to be improving veerrrrry verrryyy slowly, along with the weakness and fatigue to some extent. The progress seems to be so slow and uneven sometimes (I'll have a relatively normal BM one day, and the next have horrible cramping and diarrhea), that it's hard to convince myself this is even working. I'm also working with a GI doctor that initially doubted I even had Celiac disease, and doesn't really seem to be able to make the connection between Celiac and EPI, which can be frustrating to say the least.

 

How quickly has progress come for you? I have been taking them since June, so about 4 months now. I'm taking Zenpep 100,000 per meal and 20,000 with a snack... I just want my job and my life back!

Thanks

[pghkid33]

I would look into taking a magnesium supplement for your muscle weakness.  However I would caution you to start out on a low dose and slowly increase to find your threshold because if you take too much it brings on the big D.  I've had my magnesium levels tested various times, and each time they come back normal, however I had deficiency symptoms like muscle twitching and whole body spasms where it felt like I was falling in bed.  Before going gluten free, there was a period where my leg bones hurt all the time...not normal.  I think the important thing to note is that even if you have a normal blood level for magnesium, only 1% of it circulates in your blood, so if you have symptoms, you may benefit from a supplement.  I've told both my GP and GI doctor that I feel better when I take magnesium because it helps my muscles relax and helps me use the restroom.  I'm a former big C sufferer.  They were both supportive that I continue to take it.  I wrote more about it in this thread from May https://www.celiac.com/forums/topic/107513-wonder-mineral-magnesium/

 

This is a good article too: Open Original Shared Link

 

The GNC Super Magnesium pills are 400mg dosage, and now I only have to usually take one or two to get the same effect as four of them and there were a few times I had to take five of them.  I'm happy to say that I did receive my fat malabsorption tests back, and to my surprise and happiness, I am no longer malabsorbing either neutral or total fat!!  I have a few more doses of Creon left, and then it's time to see what happens when I go off of it.  If I start to get random bruising again, that will be a big sign to me that my Vitamin K has decreased again.  

 

Random bruising was a symptom of malabsorption for me.  Here's my progression of Vitamin K.

 

February 2013 <0.13 with a normal range of 0.28-1.78

June 2013          0.16

December 2013 0.18 (After this test, my GI then tested me for fat malabsorption.  I had been taking a supplement that was 1,000 mcg of Vitamin K which is equal to 1250% of your daily value.  I was taking 7 times that amount at his recommendation for two weeks intermittently, and the levels weren't jumping like they should have been.)

August 2014       0.34 (I had been on Creon since April 2014, so I attribute the jump in the level to that.)

 

My GI ran a lot of tests just to make sure the EPI was related to celiac and nothing else.  I think my pancreas was just burning out from years of gluten ingestion, and it does seem that all it needed was a kick start from the Creon.  Going gluten free at first didn't solve everything because of the underlying problem of fat malabsorption and EPI.  After those were discovered, now things have been progressing quickly.  My levels jumped a lot faster than in this study, but I'm also thirty years younger than the mean age evaluated.  Open Original Shared Link

 

Be persistent because you are your own advocate.  I didn't present with the classic fat malabsorption symptoms, but something wasn't checking out, and now things are moving along.  I hope improvement comes quickly for you!!  

Thank you for the response and the suggestions. I am actually taking 500 mg of Magnesium a day right now, and have been for months. I think the muscle weakness is maybe some other electrolyte, like potassium or calcium. Either way, I still seem to be very easily fatigued, the degree of which varies based on how much or how fatty my BMs are... Sometimes I wonder if I may need to be taking more zenpep, but then I hear of people like you that seem to get better on a much lower dosage! I guess not all cases are the same, but I wish mine would come along a little faster... Can I ask what sort of tests your doctor did to rule out that your EPI wasn't celiac related? My gastro hasn't ordered anything to do so, but I may need to ask him about that.

 

Thanks!

[powerofpositivethinking]

my GI ordered a MRI of my abdomen and pelvis, small bowel series and a capsule endoscopy.  Those all came back normal with the exception of a ulcer in the illeum section of my small intestine.  I didn't show pancreatitis, so that was ruled out as a cause for EPI, and I didn't have Crohns or CF.  Check out table 4 in this article which lists the different causes of EPI Open Original Shared Link

 

I had all these tests done, and when everything came back pretty much normal, my GI decided my EPI was all related to celiac.  I hope this gives you some other ideas!

 

Are you taking your ZenPep with your food and not before or after?  I know Creon works best when taken with your meal.

 

Thank you for the response and the suggestions. I am actually taking 500 mg of Magnesium a day right now, and have been for months. I think the muscle weakness is maybe some other electrolyte, like potassium or calcium. Either way, I still seem to be very easily fatigued, the degree of which varies based on how much or how fatty my BMs are... Sometimes I wonder if I may need to be taking more zenpep, but then I hear of people like you that seem to get better on a much lower dosage! I guess not all cases are the same, but I wish mine would come along a little faster... Can I ask what sort of tests your doctor did to rule out that your EPI wasn't celiac related? My gastro hasn't ordered anything to do so, but I may need to ask him about that.

 

Thanks!

[pghkid33]

my GI ordered a MRI of my abdomen and pelvis, small bowel series and a capsule endoscopy.  Those all came back normal with the exception of a ulcer in the illeum section of my small intestine.  I didn't show pancreatitis, so that was ruled out as a cause for EPI, and I didn't have Crohns or CF.  Check out table 4 in this article which lists the different causes of EPI Open Original Shared Link

 

I had all these tests done, and when everything came back pretty much normal, my GI decided my EPI was all related to celiac.  I hope this gives you some other ideas!

 

Are you taking your ZenPep with your food and not before or after?  I know Creon works best when taken with your meal.

 

Gotcha. I had a barium ct scan which showed nothing, but maybe I should ask / push for those other tests to be done just in case. None of those other causes of EPI seem too likely. I've been taking my Zenpep basically right before the meals, but I have recently started to take them as I eat. Can't say I've seen too much improvement, however. I also increased my dosage to 120,000 yesterday, so hopefully that will help a bit. Thanks again for the response.