No (Good) Deed Goes Unpunished or Why I wrote my book “How to Fight GERD/Gluten and Win” and this blog to tell people who will believe a Vitamin can make are GI systems healthy
Being a tumblr blogger, tumblr will often recommend other people’s blog too you that might be germane (related) to the topic you are blogging about often.
So as a way to connect I sometime do just that – reach out – and while some respond in kindness.
Very often people have vitriol for your attempted kind deed and even hate.
I know it is not directed at me per se, it is just their pain talking so to speak.
I have encountered this before on a personal level but though I am not surprised when it happens now I always amazed that someone who is trying to help (by reaching out) is attacked as someone who is mean and bitter.
See response to me trying to reach out to another fellow sufferer. Sufferer is the key word here.
She is still suffering but when someone try’s reaching out to them they lash out in response.
I think I can help you in about six months if I am right. Please read my blog for more information. I am right you might have Pellagra and the doctor's haven't figured it out yet. Search for Fight Gerd/Gluten and Win or the Celiacposterboy and I should come up in Google. The Celiacposterboy
Correspondence below edited with ellipsis for brevity and to leave out the most hateful parts.
“Hi, I have a few things to tell you. While I appreciate you reaching out, kinda, I guess, - . . . You attempting to diagnose other blogs, especially people who have a medical diagnosis, is unethical and just increases the stress factor on others. I have ulcerative colitis. Not a gluten allergy, not gerd, and not Pellagra. Especially not the last. Telling people they may have a deadly disease in order to sell yourself is . . . a fear tactic, and I would suggest you immensely change how you are wording this to others. Tell them what you’re actually doing, which is promoting purchases of your own book. . . You told me - a girl who is currently undergoing effective treatment for an illness - that this is not correct, and I should instead invest in your “magical cure” to a disease that has absolutely nothing to do with a gluten-free diet.
Please consider how f***g insensitive this is before you message another patient. .. this is shameful, as it instills fear, misdiagnoses, and belittles my illness. This was probably not your intent, but seriously, look at what you’re doing before you do it. And think of the effect it may have on others.”
Now we both could be wrong and in the wrong in this case. Maybe my methods seem insensitive to those who are sick of anything other than a Celiac diagnosis. Those too won’t listen but if it could help why wouldn’t you try it?
Such is the ignorance of the disease Pellagra today that when an elegant solution (a vitamin) is proposed no one believes you today.
I have written about this in other posts. And is one my most searched for posts.
https://celiacposterboy.wordpress.com/2015/12/28/are-you-a-starfish-part-2-of-a-former-sufferers-journey/
Quoting the Celiac Posterboy “Are You one of the 50 Percent of Celiacs still Struggling on a Gluten Free Diet (Part 2 A Former Sufferer’s Journey back to peace with food (gluten)
If you are a Celiac, NCGS, UC or IBS or Heartburn patient you are in a food fight and you are not winning then the book “How to Fight Gluten and Win Or How the Doctor’s Almost Killed Me” may be for you. Search for the “Celiac Posterboy” or “Celiac Poster Boy” Bing seems to work better than Google if you want to read all my posts.
This blog is about education. If you are a fellow sufferer (starfish) then I might can help you if you will consider what I say (2 Timothy 2:7). Since I started this blog I have added twice the material online that I put in my original self-published (tome) book. I probably should just reprint the book with this added information but I don’t’ think Amazon would now let me – since they would consider this copyright infringement because I published it online before listing it to be published with them.
Nonetheless having no big organization behind me the way I see it “I am just a boy walking down the beach throwing the starfish back in the ocean helping those who will listen”
“. . . Then, smiling at the man, he said I made a difference for that one.”
Want you listen? A vitamin can help us when we are STRESSED out. See https://celiacposterboy.wordpress.com/2014/12/03/the-niacin-niacinamide-challenge/
Back to my personal journey to peace with gluten and I hope yours in 4 to 6 months.
See this link if you are not familiar with the “Starfish story”
http://www.starrbrite.com/starfish.html
And though it might seem insensitive to some and maybe most to those who are misdiagnosed often with the wrong disease I am just trying to make a difference in the only way I know . . . . Education . . . one starfish at a time.
Whether thy be a Celiac sufferer, IBS, UC, NCGS or GERD suffererer.
See this link where people “get it”. IBS, NCGS etc (and probably) UC and Chron’s too is part of the/ on the Pellagra spectrum of GI disease caused not by food per se but a Vitamin deficiency.
https://celiacposterboy.wordpress.com/2015/09/22/many-ibs-patients-found-to-be-sensitive-to-gluten/
Quoting “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group. This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten. The team (of doctors) suggest that the term of IBS / (UC) might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in (IBS/UC) ie gluten sensitive patients”.
(Parentheses) added by me because I believe this one Parent disease with many presentations (children) are not separate diseases as the “cynical” UC sufferer believes it is. But one disease quoting the Celiac Posterboy “(Unfortunately) for most patients it (Pellagra) is not recognized as Disease TODAY I am not a doctor but I realized there is a lot of ignorance about this topic even among doctors because Pellagra having not been seen in most doctor’s office’s since at least the 1940’s and now are ignorant of how it present’s in a Clinical setting.”
**** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. But I have found (and my doctor and friends have found) if you take it (Niacinamide) like an antibiotic (UNTIL BURPING) then 95% of your GI stress will be in remission.
As I say in the foreward/dedication of my book “The Bees’ Story” and reprinted in part below learn from my MISTAKES. This blog is about education. Not the FEAR you now feel.
If you prefer to read the whole post you find it here at this link
https://celiacposterboy.wordpress.com/2016/02/13/dedication-the-bees-hive-story-to-the-book-how-to-fight-glutengerd-and-win/
“Dedication The Bee’s (Hive) Story
(To the book “How To Fight Gluten/GERD and Win”
To those who follow this blog “How to Fight GERD/Gluten and Win” know I have been talking about B(ee) Vitamins and B(ee) the example your doctor/clinician needs to see to not have his other patient’s stung by stress. This is what has been the unifying factor now get out there and buzz your doctor. Bee the change!
People have been raiding bee hives for eons.
Honey is a store house. Ignorant people get stung when they try to rob the honey but smart people find the right way to extract the energy without paying too high a price.
This book/blog “How to Fight Gluten/GERD and Win” is just that storehouse of knowledge learned from life experiences. The book’s author has been stung so you don’t have to be.
No man is so dumb as the man who won’t learn from other people’s mistakes.
Take as much honey (knowledge) as you can from my mistakes so bad health will not sting your quality of life.
Is it any wonder God’s promised land was described as a land flowing with milk and honey?
Where knowledge flows there is health of mind and body.
Feel free to ladle and dollop your life with the sweet stickiness of the truth found inside. For honey like truth stick to you once in contact and you can’t just wash it away.
Think of something else sticky – Gravy.
It sticks to your ribs where joint and marrow does increase one’s health and vitality.
Gravy is a highly refined flour product – the product of toil and strife by the farmer who tills the land.
This book is the same fruit of life. It is my opus. My burden is light because I give to you to take and do as you will with it.”
For to Educate is to Free https://celiacposterboy.wordpress.com/2014/09/11/to-educates-is-to-free/
I want to say at this point I have put an ebook online at Amazon the “Cynical UC” patient mentions but it is for Education mostly. It is a resource
You needn’t buy the book. Read the blog and you will be educated to what you need to do to get better. As I said in my dedication/foreword above quoting the Celiac Posterboy “This book/blog “How to Fight Gluten/GERD and Win” is just the storehouse of knowledge learned from life experiences. The book’s author has been stung so you don’t have to be.” Subtitled “How the Doctor’s Almost Killed Me” you don’t have to sufferer any longer if you don’t want too!
If fear is too much for you! I understand that. YOU can be like the “cynical UC” and go on hurting or try the https://celiacposterboy.wordpress.com/2014/12/03/the-niacin-niacinamide-challenge/ and stop the madness and see if you don’t get better in 6 months of taking Niacinamide 3/day UNTIL burping (without bloating) is your new normal.
From my “Doctor’s Get a “D” for diagnosing Non Celiac Gluten Sensitivity (UC/IBS/NCGS) ( ) added to post for emphasis
https://celiacposterboy.wordpress.com/2015/09/22/doctors-get-a-d-for-diagnosing-non-celiac-gluten-sensitivity/
I have said this before on my blog in different places but it is a spectrum of disease that is our concern here. Not individual disease(s) here but the “Correct” disease. These are not all different disease’s but ONE disease in different states of suffering – Pellagra!
The longer the damage goes on … the more severe the condition. Think GERD/Heartburn/IBS/NCGS/ (UC, Chrons etc) Celiac Disease as I have linked in several other posts.
Until usually the fear of change, any change no matter how beneficial (like the cynical UC) is more than you can bear.
Quoting the Celiac Posterboy “The key word here is “correctly” diagnosed. If the doctor stop’s as they often do (apparently in 84% of the time) at an IBS diagnosis then it could be another 6 to 10 years of suffering for the “average” Celiac Patient. Or 90+ percent in NCGS patients who show poor control when challenged with Gluten.
Or worse UC or Chron’s Why is (can) that be worse. More on that in a minute. It is true I don’t know how to win people’s heart. I am not a marketing person but I do have a heart for Fellow Sufferer’s like myself who can’t or don’t get a correct diagnosis from doctor’s.
Quoting my earlier post https://celiacposterboy.wordpress.com/2015/09/22/doctors-get-a-d-for-diagnosing-non-celiac-gluten-sensitivity/ by the Celiac Poterboy again
“As I say in an earlier blog post “Sadly too often after 8 to 10+ years of testing after all the differential diagnosis’s are ruled out you are said by process of elimination to have Celiac Disease if you are lucky and not some other acronym GI disease as I like to refer to them as a group.
GERD,IBS,UC, Chrons etc because if they turned down that street … . you are/could be in/at a dead end for they stop looking at the trigger (gluten) as the cause of your gastric upset/digestive disorder(s).”
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.
But Unfortunately for UC and Chron’s patients’ (and IBS see above) gluten is not even identified as the trigger and they never have the option to get a diagnosis that improves their condition (not really).
The medical definition is “flares”. We still don’t know what “heck” is going on with you but let’s give you yet another medicine to control your “flares” when your UC or Chron’s, IBS, or GERD flares back up.
The fire (gluten) is still burning your insides up but keep taking this medicine and everything will be ok?
Don’t mind your flares. They are common in your case!
Get the right diagnosis and get better!
See more about my storyhttps://celiacposterboy.wordpress.com/2015/08/21/gluten-independence-or-the-5th-anniversary-of-a-ncgsibsceliacheartburngerd-sufferer-eating-gluten-again-a-former-sufferers-story/ if you want to learn how “I was one of those people five years ago plus (7 years now) with +++ other disease(s) (symptom’s really) of one parent disease with many “associated” children as the medical community likes to call it when multiple diseases are more likely to occur when someone has type A disease then type B disease is more common.”
Celiac/NCGS/GERD/IBS/UC etc and most other GI acronyms I believe (it has been my experience) that lay on a similar correct diagnosis of Pellagra being the Parent disease.
I could go on and on but will close for now only to summarize that after 35+ years of general digestive upset (NCGS, Celiac Disease/IBS, GERD, Constipation, Diarrhea, Heartburn, pain, dissention, excess gas etc) and after 4 years of being gluten free I have now been able to consume gluten for 7 years now without any of the above symptoms.
And I try to Educate one Starfish at a time those who will listen.
LIKE I am doing now in this blog post and I am trying to do with the 500+ books I have given to friends.
Reply to this blog or reblog or share this link with your friends when you are BURPING so others’ will know/understand and be helped like so many of my friends and YOU if you take the Niacinamide Challenge – Praise be to God!
If you/your GI problems improve and you begin burping again for this time in years or maybe ever then surely you had sub-clinical Pellagra a Niacin deficiency and the doctor’s haven’t understood/realized it yet in a clinical setting.
See my Ihttps://celiacposterboy.wordpress.com/2015/05/21/is-non-celiac-gluten-sensitivity-andor-celiac-disease-really-pellagra-in-disguise-in-the-21st-century/? WordPress Blog entry for more information where I ask “What If you have the wrong disease? Would you get better?” like UC or Chon’s or Celiac Disease?
Is Non-Celiac Gluten Sensitivity (NCGS) and/or Celiac Disease really Pellagra in disguise in the 21st Century?
If your symptoms go away after taking Niacinamide 3/day for six months then you have Pellagra and UC/Chrons/IBS/NCGS/CD is Co-Morbid and the doctor’s don’t understand the role stress plays in Epigenetics.
That is why I wrote my book “How to Fight GERD/Gluten and Win” and this blog to tell people who will believe a Vitamin can make are GI system healthy. It did 75+ years ago and can now today!
Quoting the Celiac Posterboy again from his Gluten Independence – A Former Sufferer’s Story blog post referenced here again for convenience.
https://celiacposterboy.wordpress.com/2015/08/21/gluten-independence-or-the-5th-anniversary-of-a-ncgsibsceliacheartburngerd-sufferer-eating-gluten-again-a-former-sufferers-story/
“Let me be clear when I say Celiac here it means not only CD but Non-Celiac Gluten Sensitivity (NCGS), Heartburn/GERD, IBS and most other alphabet GI disease(s) you can think about here like UC, (Chrons) Ulcers etc.” if Pellagra is Co-Morbid and the doctors have not recognized it in a clinical setting and learn doctors have not recognized it in a clinical setting and learn how for yourself how https://celiacposterboy.wordpress.com/2016/03/25/pellagra-a-nutritional-deficiency-disorder-50-years-ago-and-in-its-late-stages-today-commonly-misdiagnosed-as-celiacncgs-or-other-gi-problems-today-confused-for-a-genetic-disease-a-differential-d/
Quoting from this post “Of course if it is Pellagra you will also most likely have other disease presentations not limited to acne, rosacea (dermatitis) skin rashes etc, or depression, anxiety, etc (dementia) symptom’s as well because they are the other D’s of Pellagra commonly diagnosed as separate diseases disease today known to be of a common cause 50+ years . . . And why Celiac Disease today is commonly known as the “Iceberg disease” because the diagnosis is just the “tip of the iceberg” of the other 20 commonly associated disease occurring with or alongside a Celiac diagnosis.”
“Now the disease of Pellagra today has mainly been reserved for subgroups of people like alcoholics.”
“Why is this? . . . because Doctor’s don’t recognized it today UNLESS they are a specialist and EVEN then to quote Nicki Frost from the Pellagra Disease Blog these “specialists (are) in fields that are ultimately unrelated to the underlying nutritional deficiency and metabolic nature of the disease.”
Quoting the Celiac Posterboy “So the cycle repeats Since these specialists don’t consider you in a subgroup that is prone to be diagnosed with Pellagra then Celiac/NCGS disease is diagnosed if you are lucky and not some other GI problem like Chrons, IBS, UC etc because in these cases the GI specialists is not even looking for Gluten as a possible trigger.”
“This is not to even mention the other D’s of Pellagra today being diagnosed as various degrees’ of Dermatitis like ezcema, psorsias, Dermatitis Herpetiformis (DH) etc which are related to skin presentations of Pellagra. Or the dementia’s of Pellagra like depression (40 percent of Celiac’s are depressed) or the “brain fog” a Celiac develops after being “glutened” I could go on and on but you get the idea.”
I should stop now. I never can write a short post because there is so much to cover in one post.
But if you print out this blog in its entirety there are over 150+ pages to read with no cost to anyone but the cost to buy the Vitamin. About the length of the book that I have updated with some of the same information so it would be convenient to read it all in one place/post.
The purpose is not to sell books but to Educate or I wouldn’t be also including this information in a blog. I have no “magic cure” as Cynical UC mentioned. Only the correct diagnosis if you take the Vitamin and get better.
I don’t benefit in any way monetarily from writing this blog. It certainly doesn’t sell books. AS the Cynical UC mentioned it just invites Vitriol to those who don’t believe but those who read this blog are educated by it and it helps it makes all the difference! And that is why I do it.
My luck in helping people come mostly with those who have suffered the least. Like GERD/Heartburn/IBS but those who have received a “definitive diagnosis” like the Cynical UC or a Chrons or Celiac sufferer then it is a bridge to far for them to cross.
But for the 60 Million Americans who have heartburn/GERD once a month. It could (does) really change their life for the better.
https://celiacposterboy.wordpress.com/2014/10/15/way-back-from-nexium/
I know because I often try and give Niacinamide to people who it could help and at least half the time they won’t take a Vitamin for their health even heartburn sufferers often won’t take a Vitamin.
See this post where I talk about why people won’t take a Vitamin for their health.
https://celiacposterboy.wordpress.com/2016/02/06/time-for-a-vitamin-reformation/
Are you afraid of a B Vitamin more than you are afraid of the medicine doctor’s are giving you for your UC, Chron’s, IBS etc.
You needn’t be my doctor himself now uses Niacinamide instead of Linzess to treat his hard to control IBS patients with amazing results! (and I have helped my friends) those who listen with UC too! The same way! Unless you are a Cynical UC patient who won’t/ wouldn’t try a Vitamin! It won’t hurt to try.
How can you know this is true? You/We can’t really UNLESS you are willing to try https://celiacposterboy.wordpress.com/2014/12/03/the-niacin-niacinamide-challenge/ and see if your digestive problems don’t’ go into remission as Prousky proved almost 15 years ago this year that Niacinamide treats digestive problems.
See this link http://www.yourhealthbase.com/database/a124b.htm
More people should know this. To Educate is to Free Truly!
Quoting the Celiac Posterboy “That is why I wrote my book “How to Fight GERD/Gluten and Win” and this blog to tell people who will believe a Vitamin can make are GI system healthy. It did 75+ years ago and can now today if Prousky is right?
**** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen.
And 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 long enough. It should as I have said elsewhere in this blog it should be taken UNTIL you are burping. Most people will burp when taking Niacinamide in 4 to 5 months or less taking it 3/daily — ie with each meal.
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 blog posts for as I have said elsewhere in this blog and it bears repeating “To Educate is to Free” Truly.
Then Tell someone (share) is all I ask https://celiacposterboy.wordpress.com/2015/12/28/are-you-a-starfish-part-2-of-a-former-sufferers-journey/ tell others is all I ask – however that is (facebook, twitter, comment on my blog, email a friend this link or link this blog to yours, reblog on your site (cite your source) or review my book on Amazon when you are BURPING for the first time in years or (EVER) – tell a friend about this blog “How to Gluten/GERD and Win” is all I ask but don’t let the chain break with you. There a lot of starfish/ Cynical UC (sufferers’) who need help. And maybe you are one yourself.
*** Remember as always this is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. But mine has taken
https://celiacposterboy.wordpress.com/2014/12/03/the-niacin-niacinamide-challenge/ and his digestive/GI problems are in remission.
I wish you much peace and the God given BURP! For
https://celiacposterboy.wordpress.com/2014/07/16/gluten-juneteenth/ has been proclaimed don’t bee the last to hear!
Praise be to God! To those who hear and listen!
The “Cynical UC” did not listen and hear will you?
2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.
The Celiac Posterboy by the Grace of God,
