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Is there a Type I and Type II Celiac Disease IF so what is your Type: What the Diabetic Model can tell us about Celiac Disease Subtypes?


Posterboy

17,616 views

Is there a Type I and Type II Celiac Disease IF so what is your Type: What the Diabetic Model can tell us about Celiac Disease Subtypes?

Celiac.com Sponsor (A13):
****these opinions are my own and are not an endorsement by Celiac.com….these are only my conclusions after years of research. 

I am sharing to generate thought, feedback, opinions, progress on the topic and change if they make sense to you.

I would say there are two types of Celiac disease based on all the available research I have read.

Think Type I and Type II like diabetes. I share/post this for your feedback, education, careful thought, insight and opinion(s).

Maybe it will spur your thinking! This Model of a "Type I" and "Type II" Celiac disease explains best what is happening IMO!

These type of grand break though ideas deserve to be shared on Celiac.com.....I suspect it will be another 10 or 15 years 

(IF then) that this "Working  Hypothesis" will be confirmed with more studies proving IT is a "Working Theory"....I just hope some

intrepid medical who might read this will be courageous enough to do a a thorough study on this topic confirming my many years of

research as the Lord has been my help!

I only ask that you be Berean in your thought! as you read this Posterboy blog post and Consider what I say....

Acts 17:10, 11

10 And the brethren immediately sent away Paul and Silas by night unto Berea: who coming thither went into the synagogue of the Jews.

11 These were more noble than those in Thessalonica, in that they received the word with all readiness of mind, and searched the scriptures (research) daily, whether those things were so.

Type I happens as a kid (refractory often)... and Type II happens as an adult (often triggered by PPIs or Stress) see below...

and why kid's don't get better (probably)....the age you get these deficiencies effects your bodies response....

triggered, in part, by congenital Vitamin deficiencies in children IMO.

I concluded this based on research I recently discovered about how Riboflavin aka Vitamin B2 can affect Villi formation in children……

and why it was first diagnosed in Children in IMO.

See these links on Riboflavin....I will summarize....if you get low Riboflavin, Thiamine etc. as a kid...you villi won't recover but if it happens

as an adult you can recover from PPIs (low stomach acid) triggered Celiac disease.

Here is the research on Riboflavin and Thiamine and Niacin and how they work together to regulate our immune system.

https://pubmed.ncbi.nlm.nih.gov/7857908/ 

https://www.ncbi.nlm.nih.gov/pubmed/8785207

https://www.sciencedirect.com/science/article/pii/S0278691510002474

 

thiamine and riboflavin together

https://www.sciencedirect.com/science/article/abs/pii/S1734114016302729

 

thiamine, riboflavin and niacin together completely down regulated inflammation/toxicity...

https://www.ncbi.nlm.nih.gov/pubmed/30903555

 

If this Posterboy blog post doesn’t make sense to you? It will have to be someone else to rediscover this again in 15 to 20+ years...

 

I have tried to educate the best I could! Too Educate is Too Free!!!!

I have tried to share how supplementing with B-Vitamins helped my GI problems, but it seems/seemed to be a “bridge to far” for some….

May this Posterboy blog post....help you "bridge" over the connection between Genetics and Environment IE....Epigenetics...(STRESS)

To discovery this I haven't cared what the truth is....I have just wanted it as it is!  Truth Frees us from Error!

I only know that......

Magnesium, Thiamine, Riboflavin and Niacin(amide) changed my life!

****note this comments that follows are notes to myself that quickly summarize these points (written previously) as cliff notes version of the above...(this I wrote for you as a summary for myself)

 

"Low stomach acid triggered by stress and we lock in with antacids..

Then being low in stomach aid makes you low in Magnesium in 6 months..

Being low in Magnesium makes thiamine unavailable to the body

When thiamine is low – you get low in Riboflavin after a month..

And villi begin swelling --- affecting absorption of other nutrients..

Then because riboflavin is a cofactor for Niacin synthesis via the Kyneurine pathway….

and you develop perfuse Skin Lesions diagnosed as DH…

When low in meat and dairy (or take mitochondria toxic medicine) you develop pellagra when you can’t synthesize

niacin from low tryptophan and riboflavin levels…"

 

This has recently been confirmed in IMO by the discovery that Tryptophan can be used as Therapeutic in the treatment of Celiacs…

https://www.news-medical.net/news/20201022/Tryptophan-found-in-turkeys-can-accelerate-intestinal-healing-in-people-with-celiac-disease.aspx

 

Otherwise you rest/settle on just having (PSP) aka Pellagra Sine Pellagra (think thyroid problems) Or Pellagra without Skin Involvements…

https://pubmed.ncbi.nlm.nih.gov/3809170/   

 

If this is triggered by infantile Beri Beri or more probably a Riboflavin deficiency your Villi might never recover...

SIDS  has been linked to a thiamine deficiency in kids.

Heck even in old age Beri Beri will cause blindness due to glaucoma...and 80pct of WE (brain version of Beri Beri) is not

diagnosed until autopsy upon death...

https://www.ncbi.nlm.nih.gov/pubmed/485004

 

Here is link https://academic.oup.com/ajcn/article/77/6/1352/4689829

 

focus on the riboflavin and gastrointestinal development paragraph...

quoting from that paragraph (read it all) it very informative...

"Recent work has shown that even when riboflavin is supplied to tissues intraperitoneally, the absence of riboflavin from the lumen

of the gastrointestinal tract from the time of weaning leads to a disruption of normal gastrointestinal development in rats."

 

Meaning in young children probably 2 or 3 years or young never (maybe up to 5 years of age estimate only)

(fully) develop Villi if their mother was also low in Riboflavin....

cleft palates develop this way....Riboflavin deficiencies in new born baby's.....Vitamin deficiencies passed from mother to baby....

The below link was recently rediscovered by me even though it is almost 10 years people don't know its role in regulating

our immune system our helping keep our GI tract healthy

Here is Riboflavin’s role in protecting against the Heatshock protein in SIBO

https://www.sciencedirect.com/science/article/pii/S0278691510002474

Entitled

"Riboflavin protects mice against liposaccharide-induced shock through expression of heat shock protein 25" in SIBO.

This also probably happening in Celiac disease as well…..we can surmise if it helps one of the GI disease’s that mimic

Celiac disease….it could help Celiac disease as well.

See this old forgotten article about how SIBO is common in Celiac disease.

Entitled Bacterial Overgrowth of Small Intestine aka SIBO Common in Treated Celiac Disease

https://www.celiac.com/celiac-disease/bacterial-overgrowth-of-small-intestine-common-in-treated-celiac-disease-r791/

Note: a couple things here….this Is not suspected Celiac disease but “Treated Celiac Disease”…..

SIBO is common in treated Celiac disease….meaning these were people eating a gluten free diet already….

And as I often site and say in my Posterboy blog post this research 10 or 15+ years old….

And yet people (doctor’s/clinician’s) are not aware of these connections/associations….

I set out to confirm my diagnosis and it took me approx. 4+ years to realize I had Low/NO stomach acid going un/misdiagnosed.

I have continued studying since then….and I am convinced now more than ever 10 to 12+ years later

that Low/NO stomach acid could help Celiac’s…..

But we have a “Long Tail” Memory…..and can’t seem to move onto another possible diagnosis like

Low/NO stomach acid despite what the research seems to say!

I am not the first to discover, study or conclude this…

This was studied 30+ years ago....but through much study and the grace of God I have rediscovered it.....

will it be another 10 or 15 years before it is accepted??? I hope and pray not! But I honestly don't have much hope....

That people will read it and believe it.....it has been lost for 30+ years for a reason.....nobody believes it!

See this research entitled

Gastric morphology and function in dermatitis herpetiformis and in C(o)eliac disease.

https://pubmed.ncbi.nlm.nih.gov/3992169/

quoting

“Antrum-sparing chronic atrophic gastritis was present in 92% of the achlorhydric patients, and hypergastrinaemia and

serum parietal cell antibodies were found in most of them. The prevalence of chronic gastritis of the body and of the

antrum increased with age.”

Note again: this was not in NCGS patients….but diagnosed Celiac and DH patients….

Surely Low/NO stomach acid is the trigger for Celiac disease.

IF this is so we would see the same thing in PPIs users…

And WE do….recent research confirmed this analysis….among PPIs users….for those who used them for a year or more

Low Stomach Acid (from PPIs Acid reducers) were found to be the trigger (CAUSE) of their Celiac diagnosis!

See this article about it on Celiac.com entitled “Do Proton Pump Inhibitors Increase Risk of Celiac Disease”

https://www.celiac.com/celiac-disease/do-proton-pump-inhibitors-increase-risk-of-celiac-disease-r2860/

They summarize it very well….

Quoting

“The data clearly show that patients who use anti-secretory medications are at much greater risk for developing

celiac disease following the use of these medicines. The fact that this connection persisted even after the team excluded

prescriptions for anti-secretory medicines in the year preceding the celiac disease diagnosis suggests a causal relationship.”

 

See also this thread started by Knitty Kitty

https://www.celiac.com/forums/topic/117685-atrophy-associated-with-ppis-nsaids-and-ssris/

Back to the main point of this Posterboy blog post….Low stomach is triggerable and reversible a “Type II” Celiac disease.

A congenital Celiac disease diagnosed as a kid…could not be reversed (in most people)….

and why it was originally diagnosed as a “Type I” genetic disease once Celiac antibodies were discovered IMHO.

I don’t believe it fair to someone who at 40 or 50 started taking PPIs to then tell them…you now have a genetic disease….

No, it was triggered by your PPIs usage….and is reversible like most EPI (Environmentally) genetic triggered diseases are….

B-Vitamins are the very definition of Epigenetics….you got low in Vitamins….and you got a disease from the deficiency….

This might not show up for years….until the Doctor’s recognize as a deficiency…..hence a “Type II” diagnosis!

I have written a couple other Posterboy blog posts that might help you. An “Open Letter” Part 1 and Part 2 that explains

how these things are connected if you think it would help you to read some more on these connections.

I didn’t understand it at the beginning of my journey, but I hope it will help start you on your journey back to heath as it did me!

It has been a long journey for me….but It can be short(er) for you….because you know the way back….I have shown you how I got back!

https://www.celiac.com/blogs/entry/2167-open-letter-part-1-to-fellow-gi-sufferers-etc-like-ibs-uc-and-other-gi-diseases-like-infant-heartburn-gerd-that-grows-into-in-time-to-ibs-uc-chrons-and-ncgs-as-a-teenager-or-celiac-disease-in-time-as-an-adult-look-beyond-to-the-parent-disease/

https://www.celiac.com/blogs/entry/2515-open-letter-to-the-many-gi-sufferers-part-2-still-suffering-look-beyond-these-symptom%E2%80%99s-to-the-parent-disease-pellagra-with-these-many-unruly-children-like-ibs-gerd-uc-etc-up-to-and-including-ncgs-and-celiac-disease-in-time-i-believe-part-2/

Just trying to help those still suffering (I believe) unnecessarily. Who think there is only one Type of Celiac disease?

2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ,

the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation,

that we may be able to comfort them which are in any trouble, by the comfort wherewith

we ourselves are comforted of God.”

I hope this is helpful but it is not medical advice.

2 Timothy 2:7  As always, “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

ADDENDUM:

I am adding this Posterboy blog post from an earlier blog post maybe it will help you….

https://www.celiac.com/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/

At the time not many people read it…..but maybe this time more people will read and understand it!

The presenting symptom of DH in Celiac disease is confirmation that the Kynurenine Pathway has broken down

and who have developed the 3rd "D" of Pellagra….

Let’s  hope the doctors realize this before the 4th "D" symptom DEATH occurs!

Since 80 percent of Wernicke Encephalopathy better known as the mental/brain symptom of Beri Beri is diagnosed on autopsy

I have my doubts they will notice the Pellagra Co-morbid in 58% (Majority) of Celiac noted no less than by the IJCD

(see Posterboy blog post link above) and why I continued to emphasis this in my Posterboy blog posts…..

because the IJCD noted the same thing!

I  only ask that you believe you own research (prophets)…..and agree with them that

Beri Beri, Pellagra Sine Pellagra, and Pellagra is happening in Celiac’s.

https://www.celiac.com/celiac-disease/how-low-thiamine-can-thin-villi-old-research-rediscovered-and-its-clinical-significance-in-celiac-disease-r5100/:~:text=Beriberi%20is%20is%20caused%20by%20low%20thiamine%20(B1).,dietary%20thiamin%20deficiency%20on%20intestinal%20functions%20in%20rats.”

At what rate only more tests/studies can prove. I ask that others in the Celiac community that might read this….

Do these studies….so that future doctors are aware of these connections/associations.

I just know we can't wait another 10 or 15 years before this trickles down to the clinical (Medical) level when current (today's)

research shows that Tryptophan can be used as a Therapeutic for Celiac disease.....IMHO confirming this theory!

https://www.celiac.com/celiac-disease/tryptophan-in-turkey-meat-can-speed-gut-healing-in-celiac-disease-r5338/

Isn't that we ALL want to speed our healing!

This is happening in other auto-immune diseases too/also because we only have ONE immune system!

With many difference (faces)….IE symptom’s…..

Note: Pellagra is found in Lupus too!

https://www.celiac.com/blogs/entry/2709-the-lupus-inflammation-model-for-sickness-beginning-with-b-vitamin-deficiencies-in-celiacs-and-other-inflammation-triggered-diseases%E2%80%A6/   

I must stop for now, or this will be way too long again!

18 Comments


Recommended Comments

Misslee

Wow interesting. Thanks so much for sharing.

Link to comment
ButWhatCanIEat

It is interesting. I do take PPIs as an adult. But I also was mysteriously ill often as a child and no one knew why, just wrote me off as sickly (migraines, vomiting, short and thin until I was 11-12).

Link to comment
Scott Adams

Very interesting!

Link to comment
AlwaysLearning

I don't think you can make a claim that PPIs are causing people to develop celiac disease, though I would not be surprised if a pharmaceutical could exacerbate a person's symptoms, making it more likely for them to start asking questions and to possibly get a diagnosis.

Link to comment
Posterboy

Always Learning,

I didn't make the claim.....but I did report the news....

It takes a while for new research to be incorporated into to new thinking......it is our Paradigm.....

When we are told something "new" for the first time.....we don't believe it....We have to  hear something 3 or 4 times often for something to "Sink In".....sometimes....

It for the same reason you can read a Bible Verse.....9x and the the 10x you read it....it makes sense to you!,.....now where before you never understood it before......

Not like you do know.....keep learning....

I like your user name....

Quoting again from the PPI research.....

https://www.celiac.com/celiac-disease/do-proton-pump-inhibitors-increase-risk-of-celiac-disease-r2860/

"The data clearly show that patients who use anti-secretory medications are at much greater risk for developing celiac disease following the use of these medicines.

The fact that this connection persisted even after the team excluded prescriptions for anti-secretory medicines in the year preceding the celiac disease diagnosis suggests a causal relationship."

Note this is not a Casual relationship......or just an association but it CAUSES IT.

IF you dig though the "Stacks" of the internet....you will find this research was first discovered 30+ years and the next generation forgot it.....

That Low/NO Stomach Acid has a very high linked association between the two conditions at over 90+ percent....much too high too be casual alone....

Go back and read what I quoted.....

Here is the original research again....entitled "Gastric morphology and function in dermatitis herpetiformis and in coeliac disease"

https://pubmed.ncbi.nlm.nih.gov/3992169/

WE know know why IS.....Acetylcholine used in the production of stomach acid becomes too low in the body triggering an immune state.

See this recent article about this new discovery entitled "Baking soda: A safe, easy treatment for arthritis?" which talks about how Acetylcholine has been found to be the triggering mechanism from Anti-Inflammatory to Inflammatory....

https://www.medicalnewstoday.com/articles/321624#Baking-soda-and-mesothelial-cells

This happen when we get too low in Acetylcholine.....and this happens when we get too low in Thiamine!

I wrote another one or two Posterboy blog post that might help you.

And this one that might help you too!

WE only have ONE Immune System with many faces IE symptom's....

This article explains how B-Vitamins help regulate are Immune System

Entitled "Be well: A potential role for vitamin B in COVID-19"

https://www.maturitas.org/article/S0378-5122(20)30348-0/fulltext#

Scan down to Figure 1 and it will explain graphically how each B-Vitamin is important in the Immune System....

Read it ALL when you get a chance.....

Also see this Case Study of Hallucinations in a Celiac Patient AFTER being treated with Thiamine!

This shows IT (Thiamine Deficiency/Wernicke Encephalopathy aka WE)  Is happening in Celiac's and the doctor's don't recognize how common it is Celiac's today!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5765830/

I didn't just wake up knowing this....It took years to get to this point....

Always bee Learning!

As I am fond of saying "To Educate is to Truly Free"....for with Education comes understanding!

Let me also share Knitty Kitty's great forum post/thread about Thiamine Thiamine Thiamine

Knitty and myself (Posterboy) has done the most on Thiamine Deficiency and/or Beri Beri in Celaics......because WE have found it helped us!

See this active thread where Tracy66's daughter is already feeling better after taking Thiamine!

I hope this is helpful but it is not medical advice.

I HAVE shared because it helped me!

Lord willing I hope it helps you too!

And if it helps you tell someone else!  That they might be helped too!

Posterboy by the Grace of God

ETA: Just search for Knitty Kitty, Posterboy, Thiamine and Beri Beri on Celiac.com and you will see many topic/threads or Posterboy blog posts that will come that might help you!

I have been reducing my time on this forum to a couple days to three times a day a week MAX.....so IF I am not on  here for a few days/weeks at a time.

Rejoice, I am working on Spiritual things instead......but Knitty Kitty is still around and I know she would be glad to help you! If you still want her help.....after reading all these threads on Thiamine.....She is an expert on the topic of Thiamine Deficiency and/or Beri Beri in Celiacs....

My heart once burned (and it still does to a degree) to help Celiac's.....but the flame to help people with Spiritual issues now burns hotter....

Link to comment
Posterboy

To All,

Because Editor is now locked down tighter than a Tick....

I wanted to edit the comment for clarity....

So I adding ETA for clarity....

Read it ALL when you get a chance.....

I meant to say....but didn't clearly communicate it properly....

Also see this Case Study of Hallucinations that got better in a Celiac Patient AFTER being treated with Thiamine in less than two weeks!

This shows IT (Thiamine Deficiency/Wernicke Encephalopathy aka WE)  Is happening in Celiac's and the doctor's don't recognize how common it is Celiac's today!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5765830/

I wish us all good health soon!

Posterboy,

Link to comment
Maddie6332

You know, Celiacs have to look out for each other no matter what. I am a celiac and I have been seeing on google that everyone has a level of celiac that is 1-4. How do you figure out your level online?And I would love to know what level all the Celiacs are here!🤔🤔🤔

Link to comment
trents
2 hours ago, Maddie6332 said:

You know, Celiacs have to look out for each other no matter what. I am a celiac and I have been seeing on google that everyone has a level of celiac that is 1-4. How do you figure out your level online?And I would love to know what level all the Celiacs are here!🤔🤔🤔

Maddie, I believe you are referring what is known as the Marsh scale. It rates the damage done by celiac disease to the villi that line the small bowel. They take samples from the lining of the small bowel with a scoping tool and then send it to a lab for viewing under a microscope. The amount of damage to the villi is given a rating of 1-4.

Link to comment
Maddie6332

Ok, is there a way you can see without doing it in a blood test?

Link to comment
trents

They don't use a blood test to assess the damage done (Marsh scale) to the villi that line the small bowel. They use an endoscope. They first may sedate you so you don't fight the scope as in the sensation of choking and then pass the scope into your mouth, down your throat, past the esophagus, through the stomach and into the first part of the intestine known as the small bowel (duodenum). The scope is a long tube with a camera on the end of it and also a small pinching tool that can grab samples of the small bowel lining. The samples are sent to a lab to be looked at under a microscope to look for damage and to give it a grade. https://www.massgeneral.org/children/celiac-disease/endoscopy-biopsy-for-celiac-disease-what-to-expect#:~:text=During the Procedure&text=They will guide the endoscope,to check under a microscope.

Link to comment
Maddie6332

Can you figure out your Marsh level from looking at your symptoms or no?

And, I got a biopsy when I was little, would that figure out my Marsh level or no?

 

Link to comment
trents
7 minutes ago, Maddie6332 said:

Can you figure out your Marsh level from looking at your symptoms or no?

No you can not.

And, I got a biopsy when I was little, would that figure out my Marsh level or no?

It could, yes. If they recorded the information in your medical chart it would be there.

 

 

Link to comment
Maddie6332

Okay! What level are you?

And how would I be able to figure out my level in my medical chart, because I am an 11 year old.

Link to comment
Maddie6332
7 minutes ago, trents said:

Maddie, the reason is some food items may not list gluten on the label but may still contain gluten because it was made with machines that also processed foods containing gluten. Not all foods that do not list gluten on the label (or wheat, barley or rye) will be entirely free of gluten. Some people who are very sensitive to even tiny amounts of gluten might become sick from eating such a product. Or, like you said, you order food at a restaurant that is not supposed to have gluten but it was cooked in the same pots and pans that gluten food was. The dog can smell those tiny amounts of gluten contamination.

So, why do some Celiacs have Gluten Free dogs and others do not, not including the cost. Do some Celiacs not need the Gluten Free dogs or is it something else? We are NOT talking about the cost.

Link to comment
trents
50 minutes ago, Maddie6332 said:

Okay! What level are you?

And how would I be able to figure out my level in my medical chart, because I am an 11 year old.

Maybe your mom and dad could go online and do that for you.

I don't know what Marsh level I was when they did the biopsy 20 years ago. Recently, I went to that doctor's office to get my medical records but that information was not recorded when they did the biopsy. Not sure they were using Marsh back then.

Edited by trents
Link to comment
trents
42 minutes ago, Maddie6332 said:

So, why do some Celiacs have Gluten Free dogs and others do not, not including the cost. Do some Celiacs not need the Gluten Free dogs or is it something else? We are NOT talking about the cost.

I'm guessing the gluten sniffing dogs are only used when someone gets so sick from eating only tiny amounts of gluten by accident or cross contamination that they might die. Personally, I don't know of any celiacs who have gluten sniffing dogs and I know a lot of celiacs.

Link to comment
Scott Adams
14 hours ago, Maddie6332 said:

Okay! What level are you?

And how would I be able to figure out my level in my medical chart, because I am an 11 year old.

This article explains the Marsh system for classifying the damage level to your villi in your intestines caused by celiac disease. This is done by the gastroenterologist who takes the tissue samples during an endoscopy, and is done by examining the samples in a microscope to see the damage level:

 I believe I was in the Marsh Type 3b-3c area and has severe damage when I was diagnosed over 25 years ago.

Link to comment
Maddie6332

Oh wow!

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