A Devastating Delay Celiac Pellagra and the Implementation Clinical Gap in recognizing one for over the other: Which twin to choose/save
I was inspired today for two reasons.
1) my brother recently had an emergency that required hospitalization and two stents to be put in his heart. Every Hour Counts/Every Person Counts
2) this new research about Zika and the implementation gap/clinical delay in recognizing a disease in clinical setting.
AS someone who has had BOTH Celiac and Pellagra. I can tell you that it can be difficult to tell them apart sometimes (most times). In many respects they look like twin(s).
Both have GI problems as a presenting symptom’s.
Both have Skin Issues in their presentations (clinical appearance). Both can have dementia/neurology symptoms.
SO you can see how easily one can be confused for the other?
And often one twin (disease) is picked over the other.
What does this have to do with Zika. Only this
Quoting the New England Journal of Medicine from the article and applies here when contemplating any disease’s symptom’s.
“Translational gaps are not unique to Zika; similar challenges exist throughout the health care system. According to several estimates,
it takes an average of 17 years for research evidence to reach clinical practice. 2
One study showed that patients receive only about 55% of the recommended processes involved in medical care. 3”
So let’s say. Today they find a miraculous cure for Celiac disease or NCGS… it would take on average 17 years for doctor’s in Clinical settings to apply these technique’s to eradicate new Celiac cases/disagnoses from occurring.
Now in this hypothetical case (which doesn’t exist yet) it would take another 17 years on average for doctors if they knew today that Pellagra (which they don’t) can mimic Celiac disease in a Clinical setting.
But one does exist (it is not hypothetical) – a cure for Pellagra exists today.
It has in fact existed for 100+ years and still doctors don’t recognize it today.
Every hour/patient matters.
And why I have tried diligently to educate other Celiac’s of this maddening fact. In 2015 a medical association was established of Pellagra occurring in/with a Celiac diagnosis.
Quoting from section 3.
Pellagra and Celiac disease in this ground breaking research.
Pellagra and celiac disease “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease . The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40].”
So if their (NEJM) timeline is correct. It will be 2032 at the earliest for the Clinical delay to catchup to research.
As I mentioned earlier it has been 100+ years since doctors’ have seen Primary Pellagra in a Clinical setting.
And it isn’t Primary Pellagra that is the problem here.
It is a phenomen that is called Secondary Pellagra. It didn’t know what it was either. And I have studied the topic extensively.
See this link from the doctor’s healthy press (Yes doctors have to look things up too) that explains the difference very well.
I will quote for reference.
1. Primary Pellagra
“This form of vitamin B3 deficiency is related to a lack of nutrition, such as not getting enough eggs, meat, seafood, or green vegetables in your diet.
Alcoholism is often a factor with primary pellagra, for the reason highlighted above.
2. Secondary Pellagra
Those who regularly consume sufficient amounts of vitamin B3 may still deal with this condition. Secondary pellagra is the result of improper absorption
of the nutrient, whether as a whole or partially. This is observed with gastrointestinal diseases that do not accept the niacin.” (Celiac disease)
It is me again pellagra and celiac posterboy.
So now we know what else it (Celiac disease) could be?
Now the question remains will it take another 17 years for the doctor’s to have you checked for it or for you to believe a Vitamin might help you?
Now Pellagra (and other B-Vitamin diseases) can be tricky to diagnose.
Because for some diseases there are not good/reliable “blood serum” test’s to confirm the clinical suspicions.
A cause and effect method is often used. If taken the B-Vitamin (NIACIANAMIDE) helps your GI problems then Pellagra or at least Secondary Pellagra was a contributing factor in your GI problems.
Dr. Prousky tested this theory. You guessed it almost 17 years ago. Next year will be 17 years and still this modern research has not trickled down to a Clinical setting.
And why I have been inspired to share my Celiac story of the road not taken.
The Pellaga road was not taken in my diagnosis either. The doctor’s did not know this could be a valid reaction to NCGS or Celiac Disease.
Knowledge is power. Now you have the knowledge to do different and probably better than you are doing now if Secondary or Rebound Pellagra is causing some of your same GI problems and this is making your original Celiac disease symptom’s even worse.
This is mostly for those still looking for answer’s despite being gluten free for 2 or 3 years and are still having “control” issues or
have become ultra sensitive to many more proteins (food allergens) like even Corn for example.
Pellagra was first diagnosed with corn based food stuffs. And promptly forgotten years ago.
See this great newspaper summary of how “Pellagra in the South” presented itself 75+ years ago. It is actually a fairly new article about this topic.
Only a year old. And found it amazing that others (though few) still talk about it today.
But doctor’s haven’t yet figured out that Rebound/Secondary Pellagra is estimated to occur in 58% (majority) of first diagnosed NCGS or Celiac patients.
If the normal clincal adoption curve applies here then it will be another 15 year before doctor’s acknowledge that indeed the corn allergy occuring in Celiac’s
is really from Secondary Pellagra.
You have probably heard this phrase there is a “generation gap” … well if the trend holds in clincial adoptation and bleeding/leading research then indeed it will be another “generation” before this “Clincial Gap” will be closed.
Then and only then will people begin to listen and get better . . .And I hate that for those still suffering … because every hour/patient/person matters.
****this is not meant to bee medical advice only the path I took. Yours might be different. But there is a 50/50 chance it might help.
I don’t know what else to say but I wanted to say/share what happened to me with the hopes it might help those many/most who might be (are) still be suffering from rebound/Seconardary Pellagra (if you are reading this/the Celiac Posterboy blog) or a friend who was/have been
triggered by their NCGS/Celiac disease.
You can rebound from Pellagra. I have praise bee to God!
The Celiac diagnosis might still be retained if Secondary or Primary Pellgra was not the cause but if it (Pellagra) was the primary cause
then the Secondary Celiac diagnoses/symptom’s will improve with Niacinamide supplementation taken 2 to 3 times a day for 6 months I truly believe.
I have emphasized the NIACINAMIDE form on my blog posts/in my threads because it is the non-flushing form of Niacin.
**** Again this in not medical advice. One size does not fit all. Some people do respond to supplementation. Some do not. You will only know if you try… . and sometimes you might have to try more than once to find the right form/Vitamin you need to take and why I have emphasized the Niacinamide form
so you can learn from my mistakes!
This is not the end of your journey… this is only beginning . . you will still want to supplement with the other (now) missing nutrients like Vitamin D (if you are low) or a good B-complex etc. and the Magnesium Citrate/Glycinate (mentioned in another blog post) But I must end for now. I hope to update my celiac posterboy blog sometime in the future (about the supplementation question and what helped me) but can’t do so now.
This celiac posterboy blog is complete as I see it. I will continue to post as I learn new things.
Like how I learned two are two forms of Pellagra. Primary and Secondary Pellagra which type do you have?
After 250+ pages of blogging you will either be convinced or not. I can’t change your mind. You will either continue suffering or decide to try the Niacinamide.
If you have a GI problem of any kind like IBS, GERD, UC, Chron’s, NCGS or Celiac disease there is a good (better than 50/50) chance Pellagra is you Primary disease and the other GI acronyms are your Secondary disease. And the(y) doctor(s) has chosen the wrong (identical/ twin) disease and a cure/remission is far from your eyes.
But if they look beyond your Celiac/NCGS diagnosis to a valid differential diagnosis of Secondary/Rebound Pellagra – it can make all the difference.
You can rebound from Pellagra and this Primary cause of GI problems should be eliminated first before a Celiac disease is proclaimed the proper/valid diagnosis.
As always search for the “Celiac Posterboy” or “Celiac Poster boy” or “Fight Gluten Win” or “Fight GERD Win” if you want to read all my celiac posterboy blog posts for as I have said elsewhere in this blog and it bears repeating “To Educate is to Free” Truly.
https://celiacposterboy.wordpress.com/2016/01/23/to-educate-is-to-free-part-two/ (A Physician’s Guide)
If you think your doctor is interested and would be willing to trial you on Niacinamide to see it could help your GI problems.
My doctor has and is better and his patients have rebounded from undiagnosed Secondary Pellagra! Only if he/she/they would think of it as the Primary disease many Secondary Celiac disease symptoms/patients could/would get better! Because they have identified the wrong disease in the first place … people suffer unnecessarily.
Don’t suffer any longer. Eliminate today Pellagra as a possible differential diagnosis and take Niacinamide 3/day for 6 months.
Don’t suffer another 17 years before the doctor’s clinical gap is closed before they recognize Celiac disease as Pellagra in the vast majority of their GERD/ NCGS/IBS/UC/Chron’s patient in/at its earliest Secondary stage before it’s the Primary presenting symptom’s. Secondary (Primary) Pellagra is not as rare as doctor’s think it is!
See how many GI diseases can be eliminated when you get the Primary disease (Pellagra) treated FIRST! And not LAST!
See my celiac posterboy blog link that explains why this is today.
But if you don’t get the correct diagnosis/disease in the beginning then you don’t get better.
Oh you cope, manage, continue to have flares get more sensitive to other proteins lactose, soy, corn (there is that corn thing again) etc.
You are said to be a Celiac who is super sensitive?
There is no hope for you now? The doctor’s don’t know why you continue to have problems.
You have removed gluten from your diet… you should get better.
But you never do . .. . you just get more sensitive and more sensitive to more food allergens (proteins) that your body can no longer digest (Corn anyone).
Stop the Madness!!!!! (Errors)
Get the right disease Pellagra and get better the way other Celiac’s have!
Pellagra was FIRST diagnosed in corn consuming patients 100+ years ago and yet this is lost on doctors’ today! But is often the LAST disease considered today long after you have received your NCGS/Celiac diagnosis despite having trouble with Corn. . . you are just a “super sensitive” Celiac.
I will say it again!!!! For Emphasis!!! Maybe if I say it enough people will get it!
Stop the Madness!!!!! (Errors)
Get the right disease Pellagra and get better the way other NCGS/Celiac’s have!
See this link also https://www.celiac.com/articles/24919/1/Are-Doctors-Missing-90-of-Celiac-Disease-Cases/Page1.html if doctor’s are missing 90% of Celiac’s they are missing nearly 100 percent of Pellagra patients because 58% (majority) of the time Pellagra is the parent disease (co-morbid) and Heartburn (GERD), IBS, NCGS, and Celiac disease it’s evil step children and you forgot to be an Alcoholic or Homeless person the only subset of the population that Pellagra is diagnosed in today!
In case this is the only post you read I will repeat here for knowledge sakes ****** the number one mistake people make when taking Niacinamide is they don’t take it often enough (2 to 3 times a day) long enough (6 months at a minimum). It should as I have said elsewhere in this blog it should be taken UNTIL you are BURPING and I might add burping WITHOUT BLOATING and your stool begins to SINK where it probably floats now. Most people will burp when taking Niacinamide in 4 to 6 months or less taking it 3/daily — ie with each meal. (Especially if you are not already taking an acid reducer like a – Proton Pump Inhibitor (PPI’s etc.)
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.
By The Celiac Posterboy who writes/blogs about the digestive disorders that Pellagra causes today often presenting as other diseases such as GERD, IBS, UC, Chrons or other GI problems and even NCGS and in Time Celiac Disease.
For many Celiac diagnosis’ take 12+ years often. (There is that “Clinical Gap” again) a devastating delay in finding the Correct (Primary) diagnosis as Pellagra Undiagnosed!
It takes 4 to 6 months to overcome your dependency on this Vitamin for your mucus membranes (GI lining) to heal itself. (These are meant to be conservative times you might experience relief before this time but do not stop taking the Vitamin for at least 6 months because you need a reserve against future stresses/trauma).
Ephesians 1:3 3Blessed be the God and Father of our LORD Jesus Christ, who hath blessed us with all spiritual blessings in heavenly places in Christ:
2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included
I write this celiac posterboy blog that you may find help/hope in your time of suffering praise bee to God! And because by God’s grace he helped me find my help and am only trying to help those who are still suffering unnecessarily!
2 Corinthians 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.
Good luck on your continued journey! The road not taken (differential diagnosis) can lead you back if you take the right road.
87% of the time a/the correct diagnosis is not the one you received or you would get better like I have! And others’ who have taken the Niacinamide Challenge.
May it (Lord willing) be as famous as the “Ice Bucket” challenge for then “Gluten Juneteenth” will have been proclaimed to those who are still suffering and have not heard! YET!
I have been blogging about this topic for 3+ years and still people have never heard of this once common epidemic forgotten almost 75+ years ago.
And to this today Pellagra is still being confused for various GI diseases.
I must stop for now. I consider this celiac posterboy blog complete but know I will post again sometime . . . but I can’t say for sure when.
Until then glory bee to God if you find this Celiac posterboy blog and find help through a Bee Vitamin the way I have have. Praise God!
AS always 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included
Celiac Posterboy by the grace of God,