Pancreas exocrine insuficiency ( suspected )

[Liam R]

After nearly 3 years celiac DX i am still in agony, cant keep weight on 

I have tried literally every diet every supplement every medication in the  world 

 

I have Drs tell my its all in my head 

And now my GI wants to test for pancreas exocrine insuficiency 

I cant really find much on this  topic but have seen that it can be a comorbidity to celiac 

Has anyone else dealt with this ? Id love to hear about it and ask questions ? 

My symptoms are =

Consistent upper abdominal pain ussually increases after meals

Pale yellow semi loose stools 

Bowel urgeny in the AM 

Brain fog 

Tingling left arm

Occasionally blurry vision accompanied with dizziness 😩 

[trents]

Welcome to the forum, Liam!

You do not say so but we assume you are making a serious attempt to eat gluten free. Since being diagnosed with celiac disease, have you had either a follow-up blood antibody test or a follow-up biopsy to confirm that healing of the small bowel villi has occurred or is occurring?

Studies show that most people who believe they are eating gluten free are actually eating lower gluten. This is especially true if they are still eating out because of the cross contamination likelihood associated with eateries who usually don't cook and prepare gluten free food items in a way that doesn't take into account cross contamination.

[Liam R]

Yes trents 

Had 3 follow endoscopies and all confurmed remarkable villi

I am very careful with my diet regarding CC 

Thanks for your reply 

[trents]

I wonder if you are cross reacting to some other food or foods whose proteins closely resemble gluten such as oats, dairy or eggs. Also, have you looked into MCAS (Mast Cell Activation Syndrome) and histamine intolerance which are common in the celiac population?

Edited November 6, 2023 by trents

[Liam R]

Yeah these rabbit holes i have ventured down 

The GI laughed at me when i mentioned MCAS but have tried antihistamines and H2 famotidine they didnt really have an effect 

I have also delved into cross reaction theory and did elimination diets removing grains etc 

Tried carnivore tried vegan 

I dont eat dairy products either 

I have come to the conclusion that food makes no difference to the effect 

I have cut out caffeine products like tea coffee cola and chocolate and did make a little improvement.

[knitty kitty]

@Liam R,

Malabsorption in Celiac Disease causes malnutrition because we can't absorb nutrients in the small intestine.  Proton pump inhibitors can make this worse because PPI's lower stomach acid.  H. Pylori infection can cause low stomach acid and messes with parietal cells in the stomach.  Parietal cells secrete the intrinsic factor needed to absorb Cobalamine Vitamin B12. 

Low stomach acid, hypochlorhydria, or no stomach acid, Achlorhydria, also occurs in Niacin Vitamin B 3 deficiency.

The gallbladder uses Thiamine Vitamin B 1 to make and secrete bile which helps digest fats.  Bile is what makes our poop brown.  Other poop colors can be a result of the gallbladder not working properly due to Thiamine deficiency.  

The pancreas uses a great deal of Thiamine Vitamin B 1 to make and secrete insulin and digestive enzymes.  Thiamine deficiency is linked to the development of diabetes.  I developed Type Two Diabetes while deficient in Thiamine.  I also had my gallbladder removed because it wasn't working properly and had become infected.  Thiamine helps our bodies fight off infections.  Antibiotics (like those used to treat H. Pylori) can cause Thiamine deficiency.  

Thiamine deficiency can cause abdominal pain (gastrointestinal beriberi), brain fog, peripheral neuropathy (tingling in arms and feet), dizziness and blurry vision.  Some of these symptoms also occur in B12 deficiency and Niacin deficiency.  The eight essential B vitamins all work together, so deficiency symptoms can overlap.  If you are low in one B vitamin, you're probably low in all the others, too.  Blood tests are not reliable measures of B vitamins, but...Don't supplement with vitamins for twelve weeks before getting blood tests done, otherwise your test results will show false high results.  Vitamins circulate throughout the body in the bloodstream.  Blood tests do not measure how well a vitamin is being utilized inside cells and organs.  One can have a Thiamine deficiency in an organ, but have "normal" blood levels.  An Erythrocyte Transketolase test is a better option for measuring Thiamine levels.  

More than the current RDA of Thiamine is needed if one eats a diet high in carbohydrates (like rice).  Tannins in tea, coffee, caffeine, and chocolate all contain chemicals that break apart thiamine making it unusable.  So be sure to avoid eating these at the same time as Thiamine supplements.

Thiamine also helps with MCAS and Histamine Intolerance by helping mast cells not to release histamine.  Thiamine helps fight infections caused by viruses (RSV, CoVid) and bacteria.  Thiamine helps regulate intestinal bacteria, helping beneficial bacteria grow.

I corrected my nutritional deficiencies caused by Celiac Disease.  I have been able to control my diabetes with a Paleo diet and Thiamine (Benfotiamine) supplementation.  I supplemented High Dose Thiamine (with Thiamine Hydrochloride, Benfotiamine, and TTFD --tetrahydrofurfuryl disulfide) as Dr. Lonsdale and Dr. Marrs recommend (Hiding in Plain Sight, linked below).  Thiamine supplementation has improved my health dramatically. 

Thiamine is water soluble and easily cleared by the kidneys.  The World Health Organization recommends taking (500 - 2000 mg/day) Thiamine and looking for improvement.  I had improvement within an hour. 

Keep us posted on your progress!

References:

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

 

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

 

The Relevance of Thiamine Evaluation in a Practical Setting

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7551939/

 

The role of pancreas to improve hyperglycemia in STZ-induced diabetic rats by thiamine disulfide

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9209469/

 

Adaptive regulation of pancreatic acinar mitochondrial thiamin pyrophosphate uptake process: possible involvement of epigenetic mechanism(s)

https://pubmed.ncbi.nlm.nih.gov/28729247/

 

Neuropsychiatric Disorders Associated With Vitamin B12 Deficiency: An Autobiographical Case Report

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8858590/

 

Gastric Parietal Cell Physiology and Helicobacter pylori–Induced Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6715393/

 

Role of Helicobacter pylori infection on nutrition and metabolism

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4177464/

 

The Effects of Vitamins and Micronutrients on Helicobacter pylori Pathogenicity, Survival, and Eradication: A Crosstalk between Micronutrients and Immune System

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8942682/

 

Update on the diagnosis and management of exocrine pancreatic insufficiency

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

 

Exocrine Pancreatic Insufficiency and Malnutrition in Chronic Pancreatitis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6462188/

 

Pancreatic Diseases and Microbiota: A Literature Review and Future Perspectives

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7692447/

 

Exocrine Pancreatic Insufficiency in Type 1 and Type 2 Diabetes

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7113197/