Pancreatic insufficiency gluten-free diet on crayon small possible celiac

[Lori from Fl]

😌

[Lori from Fl]

I’m @ the point of not being able to get out much due to my pain and diarrhea! I’m also on Creon,2 @ meals and 1 @ snacks! I’m having a hard time with buying Gluten Free food because of the lack of it and the cost! I have diarrhea everyday and pain! I’m beginning to think that I just can’t tolerate regular food anymore.Most of my 💩 is black and floats but occasionally bile colored. The reason I say that I believe I can’t tolerate regular foods is because last night I was able to eat a few pieces of gluten free pizza and I try drinking H2O with lemon and cucumber but since there’s been recalls of cucumber I’m trying watermelon and lemon water since my dinner was all gluten free I don’t have the pain today but I do have the diarrhea!Can you tell me if coffee is okay and does gluten free chocolate make your 💩 black and why they are floaters?

[trents]

Welcome to the forum, @Lori from Fl!

Floaters are usually caused by undigested fat/oils in stool. 

Have you been officially diagnosed with celiac disease?

Many celiacs cannot tolerate dairy products, either the sugar lactose or the protein casein in dairy. Same with oats because of the protein avenin being so similar to gluten. You might try eliminating those two from your diet for a while to see if the diarrhea improves.

Chocolate, especially dark chocolate, can cause me problems as well. I think it is because of the emulsifiers used.

Many things can cause black stools. Many fruits and vegetables contain pigments that cause dark stools. Blood coming from the upper part of the intestines can also cause dark stools.

[Scott Adams]

This article has some detailed information on how to be 100% gluten-free, so it may be helpful. You don't need to spend a lot on gluten-free specialty foods to be gluten-free, but it's important to stick to the diet if you have celiac disease.

 

 

[knitty kitty]

Welcome to the forum, @Lori from Fl,

Watermelon has a laxative effect and lemon is a diuretic.  

I prefer warm clove tea with meals.  Clove has beneficial properties, like lowering inflammation.

Try to avoid processed gluten free facsimile foods until you are feeling better.  Concentrate on meat and vegetables, a Paleo Diet, for several weeks, then try adding in other foods.   I followed the Autoimmune Protocol Diet and felt better within three weeks.  

Malabsorption of vitamins and minerals is a concern.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  Talk to your doctor and nutritionist about supplementing with vitamins to boost your absorption.  

Deficiencies in some of the B vitamins, like Thiamine B1, can result in pancreatic enzyme insufficiency.  I took high dose Thiamine, a B Complex and magnesium which helped resolve my digestive issues.  

Hope this helps!

[Lori from Fl]

Knitty kitty,thank you for sharing your experience with me! I do take a Women’s 50 + vitamin along with once a week 50000 vitamin D.My gastroenterologist also prescribed the creon enzyme to take 2 at every meal and 1 at every snack. My doctor said that I may have a slight stage of the celiac disease but most of my problems are the pancreatic insufficiency, and he also prescribes 4mg’s of nausea medication to help me when I’m feeling nauseous,but the pain and diarrhea keeps me down 

[Lori from Fl]

Thank you Trent and yes I have been diagnosed with a possible sm celiac disease. I Don’t drink milk due to I’m lactose intolerant and never have since I was a child,I also don’t eat oats!My main issue is the pancreatic insufficiency! I am trying to learn more about it since I don’t really know much, I just wanted to know if anyone else suffers from this issue or disease and do they suffer from pain and chronic fatigue and anxiety and depression and diarrhea and if so how do they cope with it? I take my Creon as prescribed and then my nausea medication when needed!Any and all suggestions/advice would be greatly appreciated,especially from someone who has this issue 

[trents]

"possible sm celiac disease"? Translate please. What kind of testing was done to arrive at this diagnosis?

[Lori from Fl]

6 minutes ago, trents said:

"possible sm celiac disease"? Translate please. What kind of testing was done to arrive at this diagnosis?

 Blood tests and colonoscopy with biopsies after MRI examination 

[trents]

What is "sm"?

By the way, a colonoscopy cannot be used to diagnose celaic disease. Celiac disease damages the small bowel lining. The small bowel is accessed by an endoscopy (upper GI scope).

Edited June 15 by trents

[Lori from Fl]

Small sign that apparently was saw by the blood test 

[Lori from Fl]

I have a very highly regarded Gastrolologist and he did do the upper GI and he also had an ultrasound done 

[Lori from Fl]

37 minutes ago, Lori from Fl said:

Small sign that apparently was saw by the blood test 

Sorry I misspoke but I corrected it by looking through my tests I had done and I did have the upper GI and an ultrasound along with the MRI AND THE COLONOSCOPY 

[knitty kitty]

3 hours ago, Lori from Fl said:

Knitty kitty,thank you for sharing your experience with me! I do take a Women’s 50 + vitamin along with once a week 50000 vitamin D.My gastroenterologist also prescribed the creon enzyme to take 2 at every meal and 1 at every snack. My doctor said that I may have a slight stage of the celiac disease but most of my problems are the pancreatic insufficiency, and he also prescribes 4mg’s of nausea medication to help me when I’m feeling nauseous,but the pain and diarrhea keeps me down 

"A slight stage of Celiac Disease" sounds a lot like "being a little bit pregnant."

Were biopsies taken to check for Celiac Disease microscopically when you had your endoscopy?   

Malabsorption occurs in both celiac disease and pancreatic insufficiency.  Fat malabsorption occurs, so we can become low in fat soluble vitamins like Vitamins D and A.  Vitamin A is important in dry eyes and Sjogren's Syndrome.  Smaller doses of Vitamin D every day improves its absorption more than once a week large doses.  

It's great you're taking a multivitamin, but it wouldn't hurt to take a B Complex to boost absorption and replete stores.  The B vitamins are water soluble.  

I had nutritional deficiencies because I had such poor absorption for so long.  I suffered from pain, chronic fatigue, anxiety, depression, and diarrhea.  I was taking a multivitamin every day, but it wasn't enough to meet the increased demands when one is ill, is not digesting food well, and experiencing diarrhea.  I had symptoms of nutritional deficiencies. 

I had developed Gastrointestinal Beriberi, a form of Thiamine deficiency in the gastrointestinal tract.  The pancreas uses lots of Thiamine as well.  Supplementing with the B vitamins, Vitamin C, Vitamins D and A, and minerals like magnesium,potassium, and calcium were very beneficial.

I'm attaching studies done.  I hope you'll take the time to compare your symptoms with these.

 

Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

Effect of thiamin deficiency on pancreatic acinar cell function

https://pubmed.ncbi.nlm.nih.gov/6180623/

Vitamin Nutritional Status in Patients with Pancreatic Cancer: A Narrative Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11084158/

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/

A randomized controlled trial of omega-3 fatty acids in dry eye syndrome

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3874521/

Omega-3 and omega-6 fatty acids in primary Sjögren's syndrome: clinical meaning and association with inflammation

https://pubmed.ncbi.nlm.nih.gov/32896265/

[Lori from Fl]

28 minutes ago, knitty kitty said:

"A slight stage of Celiac Disease" sounds a lot like "being a little bit pregnant."

Were biopsies taken to check for Celiac Disease microscopically when you had your endoscopy?   

Malabsorption occurs in both celiac disease and pancreatic insufficiency.  Fat malabsorption occurs, so we can become low in fat soluble vitamins like Vitamins D and A.  Vitamin A is important in dry eyes and Sjogren's Syndrome.  Smaller doses of Vitamin D every day improves its absorption more than once a week large doses.  

It's great you're taking a multivitamin, but it wouldn't hurt to take a B Complex to boost absorption and replete stores.  The B vitamins are water soluble.  

I had nutritional deficiencies because I had such poor absorption for so long.  I suffered from pain, chronic fatigue, anxiety, depression, and diarrhea.  I was taking a multivitamin every day, but it wasn't enough to meet the increased demands when one is ill, is not digesting food well, and experiencing diarrhea.  I had symptoms of nutritional deficiencies. 

I had developed Gastrointestinal Beriberi, a form of Thiamine deficiency in the gastrointestinal tract.  The pancreas uses lots of Thiamine as well.  Supplementing with the B vitamins, Vitamin C, Vitamins D and A, and minerals like magnesium,potassium, and calcium were very beneficial.

I'm attaching studies done.  I hope you'll take the time to compare your symptoms with these.

 

Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

Effect of thiamin deficiency on pancreatic acinar cell function

https://pubmed.ncbi.nlm.nih.gov/6180623/

Vitamin Nutritional Status in Patients with Pancreatic Cancer: A Narrative Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11084158/

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/

A randomized controlled trial of omega-3 fatty acids in dry eye syndrome

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3874521/

Omega-3 and omega-6 fatty acids in primary Sjögren's syndrome: clinical meaning and association with inflammation

https://pubmed.ncbi.nlm.nih.gov/32896265/

Knitty kitty,thank you for the info and yes biopsies were taken and the results were showing that there is a small beginning stage of the celiac!My doctor has done all of the necessary tests needed to make a definitive diagnosis, but I do have a question 🙋‍♀️ I don’t eat a lot so why do I feel so bloated and nausea afterwards?

[knitty kitty]

@Lori from Fl,

You could be eating foods high in histamine.  Processed foods are high in histamine.  

Our bodies can make histamine.  Plants and animals can make histamine, too.  It's a useful neurotransmitter.  Histamine release is what wakes us up in the morning.  That cup of coffee?  Causes histamine release.  Insomnia?  High histamine levels can keep us awake at night.  

Histamine is released as part of the inflammation process.  Anti-gluten antibodies not only attack gluten, but also structures in the membranes of the cells in our bodies that resemble certain segments of gluten.  The antibodies attacking our own cells call in mast cells.  Mast cells release histamine.  Histamine causes inflammation and edema. 

Our bodies can normally deal with a certain amount of histamine, but if more histamine is added in from foods and illness, our bodies can have a hard time coping. 

High histamine foods include processed foods, fermented and aged foods, crustaceans, tomatoes and others.  

Following a low histamine Paleo diet really helped me get my histamine down.  Supplementing with essential vitamins and minerals was most helpful.  Certain B vitamins (Thiamine, Pyridoxine, and Cobalamine B12), Vitamin C, and minerals like zinc, copper, and magnesium are needed to break down histamine.   

Diamine Oxidase (DAO) is an enzyme which our bodies make with these vitamins that breaks down histamine.  DAO supplements from beef and pork are available.  Some people find antihistamines work for them.  

Gastrointestinal Beriberi can develop as Thiamine Vitamin B1 stores become depleted.  Gastrointestinal Beriberi symptoms (abdominal pain, gas and bloating, diarrhea) are similar to SIBO (Small Intestinal Bacterial Overgrowth).  When we eat diets high in carbohydrates, our bodies require more Thiamin to turn the food into energy.  Gluten free processed facsimile foods are not required to be enriched or fortified with vitamins and minerals.  The Gluten free diet cuts out a major source of vitamins - the vitamins mandated to be added to gluten containing flours to replace the ones lost in processing.  When you cut out gluten, you cut out those added vitamins, too.  Add to that the damage done by celiac disease which affects our ability to absorb all vitamins and minerals from our poorly digested food.  Supplementing with vitamins and minerals boosts our absorption and ensures our bodies have the vitamins needed to heal. 

Poorly digested carbohydrates are fermented by Intestinal Bacterial releasing gas as a byproduct.  Those Intestinal Bacterial can move into the Small intestine and grow quickly there.  This SIBO can cause gastrointestinal symptoms, too.

Thiamin is a water soluble B vitamin.  Thiamin makes life sustaining enzymes with other B vitamins.  Thiamine stores can become depleted within as little as a week.  Symptoms can wax and wane mysteriously depending on the amount of Thiamine is absorbed from daily dietary sources.  Benfotiamine, a form of Thiamine, has been shown to promote healing in the intestines.  Thiamine helps Mast cells not to release histamine.  Thiamine helps break down histamine.  Thiamine is utilized to make pancreatic enzymes, digestive enzymes, and insulin.  Thiamine interacts with all the other B vitamins, so a B Complex and Benfotiamine are a great combination.  

Talk to your nutritionist and doctor about supplementing with vitamins and minerals while healing.  

[Lori from Fl]

Knitty kitty That’s for the info but I’m wondering if all of this applies to the pancreatic insufficiency because other than the small amount of celiac disease my worst problem is with the pancreatic insufficiency?Like I mentioned before he has me on the highest dose of Creon?Would you happen to know if coffee is okay to drink and do you have any advice for another type of water other then the lemon and cucumber (cucumber has recently been recalled) lemon and watermelon?Just looking for a refreshing good for you drink,again thanks 🙏 for your advice and looking forward to hearing from you 

[Lori from Fl]

Knitty kitty,do you think I should maybe try taking an antihistamine?What is a paleo diet consist of?

[Lori from Fl]

2 minutes ago, Lori from Fl said:

Knitty kitty,do you think I should maybe try taking an antihistamine?What is a paleo diet consist of?

So sorry 😞 for being so dumb but this is all quite new to me and I don’t know 🤷‍♀️ why it keeps saying Crayon when it’s spelled Correctly as Creon?

[knitty kitty]

@Lori from Fl,

You may have a small amount of damage from Celiac Disease in your intestines, but Celiac Disease affects the whole body.  The antibodies do damage not only in the intestines, but the antibodies get into the bloodstream and attack other organs and tissues.  

Some Celiacs have problems with their thyroid because of the antibodies attacking.  Some people get skin problems (dermatitis herpetiformis, acne, eczema).  Some have problems breathing because of the antibody attack on the lungs.  Some get achy joints because the antibodies attacking the joints cause inflammation.  Some have neuropathy because the antibodies attack the nerves.  Some develop ataxia because the antibodies attack the brain.  Some develop diabetes or other pancreas problems because the antibodies attack the pancreas.  The inflammation is throughout the body.  If you can control your diet, removing anything inflammatory like high histamine foods, gluten, and dairy, then you can give the body a chance to heal, but due to the malabsorption, malnutrition follows, so supplementing with essential vitamins and minerals is necessary.  

The Gluten Free Diet can be deficient in vitamins and minerals.  Supplementing with vitamins and minerals boosts your ability to absorb them.  With these essential nutrients, our bodies can repair the damage.  I believe that if you take care of the Celiac Disease, you will improve the function of the pancreas.  

The Paleo Diet is basically meat and vegetables and some fruit.  Nothing processed, no grains, no dairy, no nightshades (peppers, potatoes, eggplant, and tomatoes).  Choose low histamine foods.  After a few weeks, you should feel much better.  Then you can add in other foods as long as your body tolerates them.

I personally don't like antihistamines, but they've been helpful to others.

I like Passion Flower tea.  Twinings has a nice one.

About the Paleo Diet...

AIP (Autoimmune Protocol) Diet: A Beginner's Guide

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

And...

https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

An Autoimmune Protocol Diet Improves Patient-Reported Quality of Life in Inflammatory Bowel Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6892563/

Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

 

Long-Term Effect of Gluten-Free Diets on Nutritional Status, Body Composition, and Associated Factors in Adult Saudi Females with Celiac Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9144408/

Micronutrient deficiencies are frequent in adult patients with and without celiac disease on a gluten-free diet, regardless of duration and adherence to the diet

https://pubmed.ncbi.nlm.nih.gov/36096056/

Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet

https://pubmed.ncbi.nlm.nih.gov/19154566/

Hope this helps!

[Lori from Fl]

Knitty kitty Thank you 🙏 so very much for sharing this information with me, I will definitely speak with my doctor about the vitamin supplements and weather or not he feels like this will help! Do take a women’s 50+along with the Creon and the high dose of vitamin D which the D vitamin I am only supposed to take 1x a week. Thanks again for sharing and being so helpful