Celiac and EPI

[Wendy.DLH]

I have a myriad of health issues. After many years of digestive problems it was finally discovered that I have pancreatic agenesis. I only have the head of my pancreas which causes me to have exocrine pancreatic insufficiency for which I have to take Creon. The rx helps a lot but I still have symptoms, which didn't make sense when I follow a low fat diet.  I never knew anything about gluten intolerance / celiac until very recently. I sure fits for me. I have been diagnosed with chronic intractable migraines with aura, chronic fatigue, fibromyalgia just to name a few. I plan to speak to my primary and my GI very soon. But my question is can EPI cause Celiac? I seems like it could since the EPI inhibits your ability to absorb vitamins, minerals & proteins (and fat of course). 

Thanks in advance 

[trents]

Welcome to the forum, Wendy.DLH!

The pathogenesis of celiac disease is, at this point, unknown. There is a strong genetic component to it but also a biological stress triggering component to it, such as a viral infection. It takes both to develop active celiac disease.

When you visit with your doctor about getting tested for celiac disease, if he is agreeable to pursuing it, ask for a "full celiac panel". Many primary care docs know little about gluten-related diseases and will only order the bare minimum of tests, the tTG-IGA. In addition to the tTG-IGA these other tests should be run:

• Total serum IGA
• EMA
• DGP (both IGA and IGG)

[Wendy.DLH]

Thanks for the advice. I will definitely be sure to ask for that panel.

[Russ H]

And keep consuming gluten - you need to do that for 6 weeks before the panel for an accurate result.

[trents]

Be consuming the gluten equivalent of 2 slices of wheat bread for 6-8 weeks before the blood draw.

[knitty kitty]

@Wendy.DLH,

Welcome to the forum!

Do get checked for vitamin and mineral deficiencies.  

Thiamine Vitamin B One can become depleted very quickly.  Correcting Thiamine insufficiency is important in many illnesses.  

Thiamine deficiency is found in migraines, fibromyalgia, chronic fatigue syndrome, POTS, Celiac, Diabetes, Sjogren's Syndrome, Hashimoto's, MS and more.

Thiamine studies....

Dietary intake of thiamine and riboflavin in relation to severe headache or migraine: A cross-sectional survey

https://pubmed.ncbi.nlm.nih.gov/36047917/

And...

http://www.hormonesmatter.com/thiamine-fibromyalgia-chronic-fatigue/#:~:text=A recent case study suggests,patients given high dose thiamine.

And...

Randomised clinical trial: high-dose oral thiamine versus placebo for chronic fatigue in patients with quiescent inflammatory bowel disease

https://pubmed.ncbi.nlm.nih.gov/33210299/

And...

A study of acute and chronic anti-nociceptive and anti-inflammatory effects of thiamine in mice

https://pubmed.ncbi.nlm.nih.gov/18762821/

And...

Update on the diagnosis and management of exocrine pancreatic insufficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6880257/

And... looks like Celiac can cause EPI...

Less common etiologies of exocrine pancreatic insufficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5656454/

Keep us posted on your progress!

[Oldturdle]

On 7/10/2023 at 3:55 PM, trents said:

Be consuming the gluten equivalent of 2 slices of wheat bread for 6-8 weeks before the blood draw.

Sorry, this is really unrelated to this thread, but I have a question.  If you need to eat that much gluten to ensure a possitive blood test, how much do you have to eat to ensure a possitive biopsy?  It seems to me, if this much gluten is necessary for positive test results, why could a celiac, assuming they have no symptoms from eating gluten, not be able to have the occaisional gluten meal?  

[RMJ]

11 minutes ago, Oldturdle said:

Sorry, this is really unrelated to this thread, but I have a question.  If you need to eat that much gluten to ensure a possitive blood test, how much do you have to eat to ensure a possitive biopsy?  It seems to me, if this much gluten is necessary for positive test results, why could a celiac, assuming they have no symptoms from eating gluten, not be able to have the occaisional gluten meal?  

It may take a while for the antibodies or intestinal damage to reach an observable level, but that doesn’t mean that damage isn’t being done.  The tests have “limits of detection.” Antibodies have to reach a level that is detectable by the test.  Intestinal damage has to cover a large enough area that a random biopsy will find it.

[trents]

7 hours ago, Oldturdle said:

Sorry, this is really unrelated to this thread, but I have a question.  If you need to eat that much gluten to ensure a possitive blood test, how much do you have to eat to ensure a possitive biopsy?  It seems to me, if this much gluten is necessary for positive test results, why could a celiac, assuming they have no symptoms from eating gluten, not be able to have the occaisional gluten meal?  

The same amount, according to Mayo Clinic guidelines. And don't assume no damage is being done to small bowel villi just because you have no symptoms. Many celiacs are "silent celiacs". That means they do not experience classic GI distress of any kind but when they go for a biopsy they find their villi were severely damaged.

[Russ H]

2 hours ago, Oldturdle said:

Sorry, this is really unrelated to this thread, but I have a question.  If you need to eat that much gluten to ensure a possitive blood test, how much do you have to eat to ensure a possitive biopsy?  It seems to me, if this much gluten is necessary for positive test results, why could a celiac, assuming they have no symptoms from eating gluten, not be able to have the occaisional gluten meal?  

People with coeliac disease vary greatly in their symptoms and sensitivity to gluten. The generally accepted as safe level of gluten exposure is 10 mg per day. People start to show signs of intestinal damage above 30 mg per day. Studies show that some people with coeliac disease on a gluten-free diet can tolerate the occasional meal containing gluten without having gut damage or raised antibodies. It is not known whether this is safe nor how often or how much gluten can be consumed in this case. The only way for someone to know that they can tolerate occasional gluten ingestion would be through endoscopy and blood tests. It is best just to avoid it.

[Wendy.DLH]

On 7/11/2023 at 2:18 AM, knitty kitty said:

@Wendy.DLH,

Welcome to the forum!

Do get checked for vitamin and mineral deficiencies.  

Thiamine Vitamin B One can become depleted very quickly.  Correcting Thiamine insufficiency is important in many illnesses.  

Thiamine deficiency is found in migraines, fibromyalgia, chronic fatigue syndrome, POTS, Celiac, Diabetes, Sjogren's Syndrome, Hashimoto's, MS and more.

Thiamine studies....

Dietary intake of thiamine and riboflavin in relation to severe headache or migraine: A cross-sectional survey

https://pubmed.ncbi.nlm.nih.gov/36047917/

And...

http://www.hormonesmatter.com/thiamine-fibromyalgia-chronic-fatigue/#:~:text=A recent case study suggests,patients given high dose thiamine.

And...

Randomised clinical trial: high-dose oral thiamine versus placebo for chronic fatigue in patients with quiescent inflammatory bowel disease

https://pubmed.ncbi.nlm.nih.gov/33210299/

And...

A study of acute and chronic anti-nociceptive and anti-inflammatory effects of thiamine in mice

https://pubmed.ncbi.nlm.nih.gov/18762821/

And...

Update on the diagnosis and management of exocrine pancreatic insufficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6880257/

And... looks like Celiac can cause EPI...

Less common etiologies of exocrine pancreatic insufficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5656454/

Keep us posted on your progress!

Thank you so much for all of the information. I'll be sure to have my thiamine checked. Right now I know my vitamin D is low but that is all I am aware of. As far as the EPI mine is an unusual case. I have pancreatic agenesis. I only have the head of my pancreas. It took me years of pushing doctors to get them to investigate on that one. 

[Wendy.DLH]

On 7/10/2023 at 3:55 PM, trents said:

Be consuming the gluten equivalent of 2 slices of wheat bread for 6-8 weeks before the blood draw.

Where can I find a chart of the amount of gluten in foods?

[trents]

51 minutes ago, Wendy.DLH said:

Where can I find a chart of the amount of gluten in foods?

I don't know of anywhere you can find a chart that gives a comprehensive list of foods and their gluten content. Two slices of bread is just a rough guideline intended to communicate to those having an antibody blood draw coming up to not avoid eating gluten yet. Most people eat far more gluten in the course of a day than is contained in two slices of wheat bread so that the two slice a day guideline would be an insurance minimum . But one way to go about it would be to eat two slices of wheat bread every day but make every other thing you eat gluten free. That might be a helpful approach to those for whom the pretesting "gluten challenge" is difficult to endure. And to be honest, even two slices of bread would make some people very ill, especially if they have been gluten free already for some time. Reactions to gluten after withdrawing it for some time to be more severe. Some people just cannot manage it and so much live with the ambiguity of not knowing whether they have CE or NCGS. But in either case, they have already figured out they just need to avoid gluten. The antidote is the same for both.

Edited July 13, 2023 by trents

[knitty kitty]

@Wendy.DLH,

One more study for you...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8112188/

Do be aware that blood levels of several vitamins and minerals are not accurate.  One can have deficiency symptoms before the deficiency is reflected in blood levels.  

Discuss with your doctor the benefits of supplementing with the eight essential B vitamins and high dose Thiamine before starting supplementation.  The eight B vitamins are water soluble and easily excreted in urine and are nontoxic.  Looking for health improvements after supplementing may be the best direction to take.

For gluten amounts in foods, keep in mind that chewy gluten foods like thick chewy pizza crust and breads contain flour with higher levels of gluten.  Gluten is essential in making those big bubbles in breads.  Flour with less gluten is used in cakes (little tiny bubbles), cookies and pies.

Keep us posted on your progress!

[Oldturdle]

15 hours ago, Russ H said:

People with coeliac disease vary greatly in their symptoms and sensitivity to gluten. The generally accepted as safe level of gluten exposure is 10 mg per day. People start to show signs of intestinal damage above 30 mg per day. Studies show that some people with coeliac disease on a gluten-free diet can tolerate the occasional meal containing gluten without having gut damage or raised antibodies. It is not known whether this is safe nor how often or how much gluten can be consumed in this case. The only way for someone to know that they can tolerate occasional gluten ingestion would be through endoscopy and blood tests. It is best just to avoid it.

Thanks for that very good information!  10 mg of gluten for sure is not very much, given that an aspirin tablet contain 600 mg.  I have read that one  Gliadenx breaks down the amount of gluten contained in 1/8 of a slice of bread.  I do take 1 or 2 of these before eating a potentially cross contaminated meal.  I have  sure never heard that some celiacs can eat the occaisional gluten meal without damage.  I will research that more.  I am pretty sure I am a silent celiac.  I was diagnosed in December, 2 1/2 years ago, and decided to wait until January 1st to go gluten free.  I binged on  everything gluten for a full month, and had no GI symptoms.  After a year of being gluten free, my antibodies went down to normal, but my duodenal biopsy still showed blunted villi.  

 

[trents]

6 minutes ago, Oldturdle said:

Thanks for that very good information!  10 mg of gluten for sure is not very much, given that an aspirin tablet contain 600 mg.  I have read that one  Gliadenx breaks down the amount of gluten contained in 1/8 of a slice of bread.  I do take 1 or 2 of these before eating a potentially cross contaminated meal.  I have  sure never heard that some celiacs can eat the occaisional gluten meal without damage.  I will research that more.  I am pretty sure I am a silent celiac.  I was diagnosed in December, 2 1/2 years ago, and decided to wait until January 1st to go gluten free.  I binged on  everything gluten for a full month, and had no GI symptoms.  After a year of being gluten free, my antibodies went down to normal, but my duodenal biopsy still showed blunted villi.  

 

Maybe. But the problem I see with this approach is that most celiacs develop less tolerance of gluten after having been off of gluten for a significant period of time. At diagnosis, I was a silent celiac. But some years later, after going gluten free, I get violently ill if I consume a significant amount of gluten. To avoid that phenomenon one would have to regularly cheat on their gluten free diet so as to not lose that tolerance. And I certainly would not recommend that approach.

[Oldturdle]

Thanks, Trents.  I have not really tried intentionally eating gluten since going gluten free, except for a couple of days we spent in a hurricane shelter last September.  The repercussions I had then were just a few loose stools a couple of days later.  The gluten effects may be worse now.  (If I am going to test it, it will be on a raised, glazed doughnut.  I dream about those!)  Incidently, a year after going gluten free, I had all the usual celiac malnutrition vitamin and iron blood levels done.  All were normal.  

     I have read that in the U.K., when older, asymptomatic folks are diagnosed with celiac, the physicians often don't even recommend they go on a gluten free diet.  The thinking is that it would be too much of a hassle for them to learn about, and strictly follow the diet.  Apparently, the expected increase in life span is negligible.

[Oldturdle]

23 hours ago, RMJ said:

It may take a while for the antibodies or intestinal damage to reach an observable level, but that doesn’t mean that damage isn’t being done.  The tests have “limits of detection.” Antibodies have to reach a level that is detectable by the test.  Intestinal damage has to cover a large enough area that a random biopsy will find it.

Thank you.  That does make sense.

[trents]

1 hour ago, Oldturdle said:

Thanks, Trents.  I have not really tried intentionally eating gluten since going gluten free, except for a couple of days we spent in a hurricane shelter last September.  The repercussions I had then were just a few loose stools a couple of days later.  The gluten effects may be worse now.  (If I am going to test it, it will be on a raised, glazed doughnut.  I dream about those!)  Incidently, a year after going gluten free, I had all the usual celiac malnutrition vitamin and iron blood levels done.  All were normal.  

     I have read that in the U.K., when older, asymptomatic folks are diagnosed with celiac, the physicians often don't even recommend they go on a gluten free diet.  The thinking is that it would be too much of a hassle for them to learn about, and strictly follow the diet.  Apparently, the expected increase in life span is negligible.

I had an uncle that was diagnosed with celiac disease late in life, maybe in his mid 70s. He pretty much ignored the advice to go gluten free his physician and myself gave him. It would have cut into his social life too much which revolved around eating out. He lived to be in his late 80s. So, there may be wisdom in how they handle that in the UK. But the problem I have with that approach is that it sounds like a shotgun application and not all older people are too old to change and adapt. However, I do think you have to respect a senior's decision not to adopt a gluten free diet if they have decided to go on with life as usual.

[Oldturdle]

1 hour ago, Oldturdle said:

Thanks, Trents.  I have not really tried intentionally eating gluten since going gluten free, except for a couple of days we spent in a hurricane shelter last September.  The repercussions I had then were just a few loose stools a couple of days later.  The gluten effects may be worse now.  (If I am going to test it, it will be on a raised, glazed doughnut.  I dream about those!)  Incidently, a year after going gluten free, I had all the usual celiac malnutrition vitamin and iron blood levels done.  All were normal.  

     I have read that in the U.K., when older, asymptomatic folks are diagnosed with celiac, the physicians often don't even recommend they go on a gluten free diet.  The thinking is that it would be too much of a hassle for them to learn about, and strictly follow the diet.  Apparently, the expected increase in life span is negligible.

trent.  I will try to send the link for a very interesting study I found about liacs who occaisionally eat gluten.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7075003/

[trents]

20 minutes ago, Oldturdle said:

trent.  I will try to send the link for a very interesting study I found about liacs who occaisionally eat gluten.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7075003/

Yes, someone posted that same study link recently on the forum or at least referred to it. Intentional cheating on the gluten-free diet in order to maintain good symptomatic tolerance would work for a lot "silent" celiacs but would not be advisable I think for many others who react violently to even small exposures. And if a silent celiac lost all tolerance to gluten because of strict adherence to the gluten-free diet, it wold be difficult to reinstate that tolerance. Maybe it could be done by starting with tiny amounts of gluten and then slowly increasing the amount over time until you got to the point where you could eat a macro amount without symptoms. I don't know. All in all, I would not recommend it.

[Oldturdle]

3 hours ago, trents said:

Yes, someone posted that same study link recently on the forum or at least referred to it. Intentional cheating on the gluten-free diet in order to maintain good symptomatic tolerance would work for a lot "silent" celiacs but would not be advisable I think for many others who react violently to even small exposures. And if a silent celiac lost all tolerance to gluten because of strict adherence to the gluten-free diet, it wold be difficult to reinstate that tolerance. Maybe it could be done by starting with tiny amounts of gluten and then slowly increasing the amount over time until you got to the point where you could eat a macro amount without symptoms. I don't know. All in all, I would not recommend it.

trent, to me, the most intetesting finding of the study was the negligible difference in the small intestinal biopsy results between the cheaters and the strict adherents to the diet.  The study was done with silent celiacs, who cheated because they had no gluten ingestion symptoms, and they only did this weekly, or less often.  Apparently, the death rate was actually lower among the cheaters.  Anyway, this study is intriguing.  It would really be interesting to know what mechanism is at work that causes some people to have symptoms, and some people not to.  I just may break down and have that doughnut...

[trents]

11 minutes ago, Oldturdle said:

trent, to me, the most intetesting finding of the study was the negligible difference in the small intestinal biopsy results between the cheaters and the strict adherents to the diet.  The study was done with silent celiacs, who cheated because they had no gluten ingestion symptoms, and they only did this weekly, or less often.  Apparently, the death rate was actually lower among the cheaters.  Anyway, this study is intriguing.  It would really be interesting to know what mechanism is at work that causes some people to have symptoms, and some people not to.  I just may break down and have that doughnut...

Well, if you are going to have a breakdown, make it worth it with something yummy!

[trents]

I would like to see some research done on the bearing that having one celiac gene vs. more than one has on sensitivity as well as if any one of the genes is associated with higher sensitivity levels to gluten. I have a suspicion that celiac gene variations may account for sensitivity differentials as well as intensity of reaction to getting glutened, amount of villi damage done by exposure, "silent celiacs", ect.

[Oldturdle]

8 hours ago, trents said:

I would like to see some research done on the bearing that having one celiac gene vs. more than one has on sensitivity as well as if any one of the genes is associated with higher sensitivity levels to gluten. I have a suspicion that celiac gene variations may account for sensitivity differentials as well as intensity of reaction to getting glutened, amount of villi damage done by exposure, "silent celiacs", ect.

trent,  I have often wondered about that myself.  I have only one celiac gene.  (I forget which one ot is, but it is the most common one.)  Anyway, i am basically silent.  Scott Adams, the head of this sight, has mentioned that he has two celiac genes.  He has also written about how severe his symptoms were before diagnosis, and how baddly he reacts to accidental glutenning.  Yes.  It would make an interesting study.