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pghkid33

Pancreatic Insufficiency

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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:

http://www.ncbi.nlm.nih.gov/pubmed/20458623

 

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!

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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

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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.

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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

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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.

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Sure:  here is a link for Pancreaze:  http://www.pancreaze.net/pdf/PANCREAZE.pdf

 

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

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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?

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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

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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.

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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.

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glad to hear things are improving!

 

here's a thread you might find helpful:  http://www.celiac.com/gluten-free/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:

http://www.ncbi.nlm.nih.gov/pubmed/20458623

 

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!

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glad to hear things are improving!

 

here's a thread you might find helpful:  http://www.celiac.com/gluten-free/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 :)

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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 http://www.celiac.com/gluten-free/topic/107513-wonder-mineral-magnesium/

 

This is a good article too: http://glutenfreeworks.com/blog/2010/04/16/magnesium-deficiency-in-celiac-disease-common-and-dangerous/

 

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.  http://www.ncbi.nlm.nih.gov/pubmed/20458623 

 

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 :)

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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 http://www.celiac.com/gluten-free/topic/107513-wonder-mineral-magnesium/

 

This is a good article too: http://glutenfreeworks.com/blog/2010/04/16/magnesium-deficiency-in-celiac-disease-common-and-dangerous/

 

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.  http://www.ncbi.nlm.nih.gov/pubmed/20458623

 

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!

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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 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132852/#!po=0.925926

 

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!

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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 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132852/#!po=0.925926

 

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.

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    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics

    Jefferson Adams
    Celiac.com 06/12/2018 - A life-long gluten-free diet is the only proven treatment for celiac disease. However, current methods for assessing gluten-free diet compliance are lack the sensitivity to detect occasional dietary transgressions that may cause gut mucosal damage. So, basically, there’s currently no good way to tell if celiac patients are suffering gut damage from low-level gluten contamination.
    A team of researchers recently set out to develop a method to determine gluten intake and monitor gluten-free dietary compliance in patients with celiac disease, and to determine its correlation with mucosal damage. The research team included ML Moreno, Á Cebolla, A Muñoz-Suano, C Carrillo-Carrion, I Comino, Á Pizarro, F León, A Rodríguez-Herrera, and C Sousa. They are variously affiliated with Facultad de Farmacia, Departamento de Microbiología y Parasitología, Universidad de Sevilla, Sevilla, Spain; Biomedal S.L., Sevilla, Spain; Unidad Clínica de Aparato Digestivo, Hospital Universitario Virgen del Rocío, Sevilla, Spain; Celimmune, Bethesda, Maryland, USA; and the Unidad de Gastroenterología y Nutrición, Instituto Hispalense de Pediatría, Sevilla, Spain.
    For their study, the team collected urine samples from 76 healthy subjects and 58 patients with celiac disease subjected to different gluten dietary conditions. To quantify gluten immunogenic peptides in solid-phase extracted urines, the team used a lateral flow test (LFT) with the highly sensitive and specific G12 monoclonal antibody for the most dominant GIPs and an LFT reader. 
    They detected GIPs in concentrated urines from healthy individuals previously subjected to gluten-free diet as early as 4-6 h after single gluten intake, and for 1-2 days afterward. The urine test showed gluten ingestion in about 50% of patients. Biopsy analysis showed that nearly 9 out of 10 celiac patients with no villous atrophy had no detectable GIP in urine, while all patients with quantifiable GIP in urine showed signs of gut damage.
    The ability to use GIP in urine to reveal gluten consumption will likely help lead to new and non-invasive methods for monitoring gluten-free diet compliance. The test is sensitive, specific and simple enough for clinical monitoring of celiac patients, as well as for basic and clinical research applications including drug development.
    Source:
    Gut. 2017 Feb;66(2):250-257. &nbsp;doi: 10.1136/gutjnl-2015-310148.