Posterboy's Blog

Is Non-Celiac Gluten Sensitivity and/or Celiac disease really Pellagra in disguise in the 21st Century? 

Celiac.com Sponsor (A13):
Whether to supplement or to not supplement by the Posterboy

What to say? What not to Say?  So many things to cover. . . yet so little time/room for it in only one post.

Let me be clear. I think it is or was in my case.  That is I think one disease lead to the other.  Your story might be similar.

Which one to choose?  Supplementation I think answers/answered that question (for me) at least.  And I hope it will you too!

In the work place we have a phenomenon called “Silos”.

“That is not my job” is heard way too often. Instead of let me see if I can help you with that! Right?

It would be called or known as good Customer Service if we were in business for ourselves to offer help.

But not in medicine . . . it is stay off my territory/turf and an all-out war breaks out.

But when it comes to diseases/symptom’s that are or can be “Differential Diagnosis” we have that same bunker mentality

or “Silos” thinking.

Talk to your friends who have NCGS or Celiac disease (and I have tried) and inevitably they will say . . .

I do not have Celiac . . . I have IBS or I am not a Celiac (yet) I have NCGS instead.

Or talk to a UC patient (stuck) in their Silo (diagnosis) or a Chron’s patient . . . and the lament is the same.

I do not have that. It is almost a knee jerk reaction.

“I can’t have that”.

I know because I have tried diligently to educate my friends and many forum members on this board of how Pellagra makes

more sense when you stop and ask seriously “What else”? can/could cause these/my symptom’s.

I recommend this thread/post where other forum members staunchly defend their silos/bunkers.

In it NCGS, SIBO and Pellagra sufferers battle to the proverbial death over their positions.

Let me say at this point???? Who knows who is right?

Captain NCGS could be right or SIBO girl could be right or all three could be right!

But it is better to settle on one diagnosis (usually) and run with it so to speak.

And each in turn have faithly done this and ran to their bunkers to get more fuel for the fight?

(SIBO girl) I am sorry I don’t know the percentage for SIBO that becomes’ Celiac or Pellagra.

But for IBS and NCGS the failure rate(s) are horrible.

For weatherman we would be happy with 50/50 right? (though they are getting somewhat better these days)

A good baseball player is said to be good when he bats .300 or better. He is doing good.

Well in Celiac’s we are still well below that number.

We are not doing good at catching Celiac or is it Pellagra early enough in the sub-clinical phase? where it could prevent the most harm!

See this post where 90% of Celiac’s in Canada is missed or Misdiagnosed.

https://www.celiac.com/articles/24919/1/Are-Doctors-Missing-90-of-Celiac-Disease-Cases/Page1.html

quoting

“Among their findings is likely ~1%, with 87% of cases being undiagnosed.” And the rate in the US is only marginally better at maybe 80%

being misdiagnosed.

They even pose this important question? “Why? Or How could this be?”

They are puzzled at such a high misdiagnosis of Celiac disease.

Quoting again

“How could this be? One reason is that even classic celiac disease symptom, such as abdominal pain, bloating, gas, diarrhea, anemia and weight loss

can mimic other conditions. Less classic symptoms such as fatigue, low vitamin C, D and calcium levels can be misleading.”

Lupus is known as the great imitator disease. And Celiac or is it Pellagra could be called the same in 87% of cases if you are lucky. 

They say imitation is the sincerest form of flattery.  Well not in this case (it is all out war). One disease is being disguised at the other. 

Which one to choose though since they both imitate each other. For me supplementation let me see which was the last disease/man standing so to speak.

But let’s go back to our bunker(s) of symptom’s and defend/ask/consider how in 87% of cases we know we have the wrong disease.

https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html

As to/for the IBS sufferers If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?

The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly just UC or other GI disease presumably.

It is even worse in NCGS cases.

https://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html

90% + of NCGS have the wrong diagnosis . . . but don’t point that to anyone because “I don’t have that disease” artillery will come out and blast you into smitherins.

In the military it is called “friendly fire” whatever that means right.

You can’t make anybody happy it seems. I am a “friendly” here. Tell someone (a Chron’s) patient they could have Celiac and duck for cover because

“friendly fire” explodes.

Pick your “poison”. . . IBS, UC, Chron’s, NCGS, SIBO etc. and be prepared to be gunned down in cold blood (forgive the analogy) lest you suggest somehow in some way

a “differential diagnosis” makes more sense.

A valid I dare say standard “process” of modern/good medicine is the differential diagnosis. If it is not the doctor has not done justice for you or you for yourself

has not done you justice.  Isn’t that what we all want – to know just what we need to do to get better that is justice/peace and good medicine. 

We are our own best advocate!

Supplementation to me answer's that question and Is good customer service.

Think of/about the show House who inevitably get’s the diagnosis wrong the first time and the second time and maybe (if it is not a two part episode) by the fourth

or fifth try we learn an hour later what took months to determine you (the patient) has NCGS, SIBO, Chron’s, or Celiac disease etc. and the patient goes way coming in feeling

crappy but goes away happy!

Oh wouldn’t it be nice if “real life” imitated art sometimes.

So if the “war” you find yourself in (Chron’s, NCGS, UC, etc. and yes Celiac disease) is imitating Pellagra then consider a “Differential Diagnosis” if you are like

the 58% of Celiac’s who also have Pellagra.

Open Original Shared Link

Maybe . . . just maybe you will find you are like me and getting a valid differential diagnosis helps your GI problems too! The odds of this happening is

(far) better than you think.

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

I ask again Is Non-Celiac Gluten Sensitivity and/or Celiac disease really Pellagra in disguise in the 21st Century?

Let me be clear. I think it is or was in my case.

Because if you get the wrong disease the battle (war) in your GI will wager on but if it is Pellagra then the battle can be won.  Peace how sweet the sound!

If you have not heard of Pellagra and if it was not part of your valid “Differential Diagnosis” Open Original Shared Link

Don’t’ be surprised by this most doctors’ have not either.

Read Dr. Heaney’s blog posts where he summarizes why this is today!

quoting

“2014 marks the 100th anniversary of the war on pellagra, a war that lasted nearly 25 of those years before victory could finally be declared.

You have not heard of the war on pellagra? The celebration is not on your calendar? You’re not alone.

Why did it take so long? Was the science so intractable, like the current “war” on cancer? No. It was politics (differential diagnosis) and pigheadedness

(Silos) that were the obstacles.”

The science is valid. A Differential Diagnosis is “good” medicine but it will be hard to believe this because of our/are bunker mentality.

(I know I have done the same thing)

It is said the longest distance/foot in the world is the 12inches from your head to your heart.

It only took me 4+ years of research to convince me that more than ever the 90+ percent of the most common GERD/Gluten/NCGS/IBS, Chrons’,

Celiac disease issue(s) etc. GI problems are related to sub-clinical presentation of Pellagra unrecognized in a clinical setting. Or imitating first IBS and NCGS

then Celiac disease (in time) if you will.

If you know in your head something else is still wrong then let your heart be open to another front of the war co-diagnosis/co-morbidity/supplementation.

Or if you have/continue(d) to develop more leaks in the dam (leaky gut, SIBO etc. or other food allergies in addition to gluten) then consider Pellagra

as a valid differential diagnosis.

Especially if CORN is now bothering you too! The medical definition of Pellagra first diagnosed/discovered in corn products 75+ years ago is Pellagra.

Since auto-immune diseases rarely occur alone it only makes sense to tackle the easiest one’s first.

On this board there are two camps. (It is true in many things of life).

Supplementing or not to supplement is the 64K dollar question.

The one’s who believes in supplementing readily attack the front (symptom’s) on/from whatever artillery (vitamins and minerals) they can find to shore

up their defenses.

The other camp prefers to hunker/bunker down and wait for reinforcement/symptom’s to get better and the battle/siege to pass.

But in war there is an old saying. “A city besieged is a city taken”.

I prefer to advance when possible to take the “fight” to the enemy.

Supplementing allows me to do this. .. and this is how I learned to fight back Pellagra disguising itself as Celiac disease today.

Disguise is a great trick of the enemy. For if you get the wrong diagnosis then the symptom’s never getting better and the battle/war rages on.

But What If you have the wrong disease? Would you get better?

This is dedicated to kareng for she once asked me why? worry about a disease I couldn't be sure I had over the one I knew I had. . .

without supplementation I couldn't be sure if it was Pellagra or Celiac disease I was fighting.

Supplementing answers/ed that question.  It removes/d a front in the war.

So what do you say are you ready to fight back the enemy?

It might not be the one you think.

Two front wars are rarely winnable.  If they were I might be typing this in German.

I need to stop for (now) but this is my story. . . maybe yours is similar you will only know if you are willing to try.

I can only tell you what helped me. I can’t tell you if it will help you.

Praise bee to God! To those who will hear and listen!

Let me say (Thank you) at this point to Jmg.  Thank you for taking the Magnesium and a B-complex and telling others how much they helped

your "tiredness" etc. . .

I know there is a lot of confusion out there.

I am just trying to help those who are still suffering (losing the war). For a battle the war was lost. I implore you don’t’ let it (war/diagnosis)

be lost because of “pigheadedness” to use Dr. Heaney’s words because you won’t try fighting back with supplementation.

The Starfish Story Original Story by: Loren Eisley

“One day a man was walking along the beach when he noticed a boy picking something up and gently throwing it into the ocean (world wide web) …

Son, the man said, don’t you realize there are miles and miles of beach and hundreds of starfish?

You can’t make a difference!

After listening politely, the boy bent down, picked up another starfish, and threw it back into the surf. Then, smiling at the man,

he said "I made a difference for that one.” . . . I hope that one is you reader -- fellow sufferer from a former Pellagra sufferer diagnosed as Celiac disease.

I am that Celiac and Pellagra posterboy walking along the shore throwing starfish back or trying too!

As I am fond of saying “To Educate is to truly free!” Where there is a free exchange of knowledge there is health and peace for one’s soul and body!

Let’s all make peace for to educate is to empower to change.

Change is not easy . . especially if you have a bunker mentality I grant . . . but possible with education for with education comes understanding.

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 (starfish/sufferer), by the comfort wherewith we ourselves

are comforted of God.”

Remember **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your regimen.

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

posterboy by the Grace of God,

Addendum: The Time has Come to talk of Walruses and Kings and Many Things

(Hat tip to Jmg you know who you are – your wit is priceless) a horrible paraphrase of Lewis Caroll’s quote. I think I am an American  who was born with British humor

sometimes because who doesn't like a good quip. . . quote or misquote.  Like your NCGS bit/disguised as NCIS.  Imitation is the sincerest form of flattery --

unless it is medicine then it is the unkindest cut. . .

(See I can't write a short thread/a long winded American with British wit)

Truly the time has come for me to spend some time “mending fences” and spend more time either away on the farm helping my brother or at least a “little time”

away somewhere else/doing something else.

My changing life requirement(s) and other spiritual interest(s) has/will take/are taking me away from this board more and more till it is less and less.

And in time people will ask what ever – happened to “posterboy” and his low stomach acid problems.

I can only hope what I have shared here has lifted the tide of knowledge a little about stomach acid issues and your boat/life has been lifted enough for you to freely sail again.

Take what you have gained and share. . . at every port you land in . . . who knows what/ where the wind of (life) might take you.

I know I will miss many of you on this board but my experience does not match up with many others on this board and I don’t want to impose my ideas

where/if they are not wanted or don’t seem to be doing any good.

If anyone else thinks they may have low stomach acid who is reading this like I had feel free to PM me and I will try and answer any question I can but searching

for the posterboy on celiac.com is the easiest way to find/answer most any question you might have. (For I can’t answer/write) a short thread and always tried to be exhaustive

in my answers.

I will still comment when from time to time if it feels right and my experience of low stomach acid being misdiagnosed can help those still suffering.

https://www.celiac.com/forums/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

It is my hope that at least some starfish/sufferers have found hope/help in the things I have suffered with/and shared about how /what helped me. Praise bee to God!

It only takes one to make a difference!

Don’t every stop being your own advocate!

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 (starfish/sufferer), by the comfort wherewith we ourselves are

comforted of God.”

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

Posterboy by the grace of God,