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Celiac and EPI


Wendy.DLH
Go to solution Solved by knitty kitty,

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Wendy.DLH Newbie

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 


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trents Grand Master

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 Newbie

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

Russ H Community Regular

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

trents Grand Master

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

  • Solution
knitty kitty Grand Master

@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 Collaborator
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?  


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RMJ Mentor
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 Grand Master
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 Community Regular
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 Newbie
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 Newbie
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 Grand Master
(edited)
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 by trents
knitty kitty Grand Master

@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 Collaborator
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 Grand Master
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 Collaborator

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 Collaborator
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 Grand Master
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 Collaborator
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 Grand Master
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 Collaborator
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 Grand Master
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 Grand Master

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 Collaborator
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.

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White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
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