A Devastating Delay Celiac, Pellagra and the Implementation Clinical Gap in recognizing one for/over the other; Which twin to choose/save
From the blog "Posterboy's Blog"
I was inspired today for two reasons. (Sorry for the formatting)
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 entertaining thread where SIBO girl, Captain NCGS and Pellagra boy are superheroes saving others from their respective disease's
They are all superheroes in their own right in my mind (hat tip to you both) and good luck on your continued journeys.
Now back to my updated blog post on the "clinical gap" that is so devastating.
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 (NIACIANMIDE) 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. With my changing life and farm responsibilities/realities I will not get to participate on this forum the way I once could
so I wanted to say what happened to me with the hopes it might help those who might be still be suffering from rebound/Seconardary Pellagra
triggerd 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.
see my earlier posterboy blog post for/on how to take Niacinamide FAQ and why you would want too.
Or if you prefer you read this thread that talks' about Vitamin's and Mineral's role (or lack thereof role) on/in inflammation in the body.
It focuses especially on how Magnesium and B-Vitamins can help depression.
**** 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 thread) But I must end for now. I hope to update my blog sometime in the future (about the supplementation question and what helped me) but can't do so now.
I would refer you to one of Ennis_Tx many post's on his supplementation program for now or one of Knitty Kitty's threads.
They have both done very well with supplementation and are bedrock kind of people who can give you great advice learned from life's experience.
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,