Search the Community
Showing results for tags 'chrons'.
Found 6 results
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, Chron's and NCGS as a teenager or Celiac disease in time as an adult - Look beyond to the Parent disease
Posterboy posted a blog entry in Posterboy's BlogOpen Letter to the many GI sufferers etc Part 1’ Like IBS, UC and other GI diseases like Infant Heartburn (GERD) that grows into (in time) to IBS, UC, Chron’s and NCGS as a teenager or Celiac disease in time as an adult— Look Beyond these symptom’s to the parent disease –- Pellagra. *** a couple of notes to begin with. You can see I meant this to be one post -- but as usual it got too long to read at one seating. 2) because I might be having a medical procedure soon (I am posting part 1) in case I don't get to part 2 until latter. ****This is only my experience (and my research) that has lead me to my conclusions. They are NOT endorsed by celiac.com nor should this blog post be considered and endorsement of these ideas by celiac.com. Thank you in advance for letting me share my opinions and conclusions. (God being my help) may this posterboy blog post benefit those who take the time to read them/it. What follows is something that has been on my heart to share for a while. It is my story only. . . yours may be different but I have found if it helps you . . . it will help others too! And as they say "Without Further Ado" Here are my thoughts about my original celiac diagnosis and what/why I think was also low in stomach acid but a proper diagnosis was not made because not enough/proper test's were done to rule it out as an official "differential diagnosis". If it is happening to me. . . it is happening to others! Below begins the body of blog post of "An Open Letter Part 1 to Fellow GI Sufferers" Because as I am fond of saying “To Educate is to (Truly) Free” God being my help 2 Timothy 2: 7 as always“Consider what I say; and the Lord give thee understanding in all things” this included and all the knowledge I have absorbed in 10 years of researching this topic for myself (God being my help) how I discovered this forgotten medical fact after 4 years of research (see below) and have been helping people for over 6 years (those who will listen) and who better to learn from than someone who has done it himself and not only for himself but 100’s of his friend too! See this celiac.com article where much of this information is summarized in something called a white paper about the “When Myth becomes Medical Fact People suffer unnecessarily; The Case of Mistaken Identity: How Pellagra now thought to be rare became known as Celiac Disease — A White Paper linked at the end of the article. Referenced here if you have not had a chance to read the article since it was featured on celiac.com https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html “A white paper is an authoritative report or guide that informs readers concisely about a complex issue and presents the issuing body’s philosophy on the matter. It is meant to help readers understand a (complex) issue, solve a problem, or make a decision.” By reading this blog post I hope to convenience you that your experience can be the same as mine. A differential diagnosis is one of the best standard of medicine rarely practiced today and how specialists decide between competing diseases like UC or Chron’s or IBS or Celiac Disease and if I am right Co-Morbid Pellagra now forgotten for 75+ years since the “War on Pellagra” is now over according to medical professionals’ but sadly the battle rages on for at least for the 60 Million American’s alone who get (Infant) Heartburn once a month not counting the heartburn that grows up to be IBS, UC, Chron’s or Celiac disease. See link below from Creighton University that mention’s this medical fact. Pellagra is not a disease of TODAY. Celiac is the disease of Choice today! But in 58% of those diagnosed with Celiac TODAY 58% are Co-Morbid with Pellagra as I was and most ALL my friends because they ALL get better when they take the Niacinamide. I now it works. I have seen it work for too many people. And I believe it can/could work for you too! See end of this blog posts and my doctor does too. He now uses this method in his practice with great success! And it can work for you too! (I believe) Lord willing if you do as I suggest and take Niacinamide 2or 3/day for 6 months (see below). I now describe myself as the Celiac and Pellgara Posterboy as a “Former Celiac Sufferer” who blogs about digestive disorders that Co-Morbid Pellagra causes often presenting as other GI diseases like IBS, UC, Chons, NCGS and GERD” Note **** This IS NOT medical advice only my personal experience of how through deep research (and the Grace of God) after 4 years of study I found what the doctors have always known but overlook in treating the many symptoms of Celiac Disease. The true cause as recorded in medical textbooks the world over the cause of 90+ percent of Digestive disorders (I believe) is because of one Vitamin Deficiency/Dependency. This blog post and (Posterboy blog) is about that ONE nutrient/vitamin/mineral that is lacking and the causative agent for most Digestive Disorder(s) presenting as the Iceberg Disease(s) of Gluten Insensitivity aka Celiac Disease in its most advanced stage (with enough time). And I hope at least ONE other Celiac besides me will believe also and be helped from this post. As proven/researched by Prousky almost 17 years ago that low Niacin levels lead too low stomach acid. It is time this information was known by a wider audience – the Celiac audience. http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm see also by posterboy blog about this topic. It is a devastating delay. 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. When Celiac Disease points it head (rears it head) out of the water 20+ symptoms (known as associated diseases) have already presented themselves in various malady’s. When only 3 (the 3 Ds) symptoms where need 75 years ago to diagnose the condition once considered cured but is rampant in today’s society because we are more STRESSED than ever. Digestive disorders, dermatitis syndromes, and dementia disorders – known then as Pellagra 75+ years ago but now is known mostly as various GI diseases depending on how long or low you are in Pellagra Preventive Factor as it was called in the day. Here is the best research article I have ever read on the topic. https://www.hindawi.com/journals/cggr/2012/302875/ They called it “Lessons from Pellagra” but the problem is we haven’t learned them. What does this look like in human beings? If one is critically low in Niacin the 3 D’s of Pellagra (Dementias, Dermatitis’s, and Digestive Issues) show up. (see hindawi link about for the exhaustive complete diagnostic picture of all the ways Pellagra might present itself. It is very exhaustive and informative) We will not count the 4th D of death if you are reading this blog. Explained here well http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ To quote Dr. Heaney a Past Professor of Medicine at Creighton University “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.” I have been in remission now for 5+ years after suffering 30+ years. Remission is possible! From Pellagra! Epigenetics has been discovered as the cause for Pellagra being diagnosed as Non-Celiac Gluten Sensitivity (NCGS) or Celiac disease when Heartburn/Gerd then IBS etc. and NCGS in time grows up to become your Celiac Diagnosis. Learn how Lifestyle (STRESS) is a risk factor for Celiac Disease. see this article entitled ‘Lifestyle is a Risk Factor for Celiac Disease”. https://www.sciencedaily.com/releases/2015/11/151102100302.htm Quoting an article that appears on Celiac.com http://www.celiac.com/articles/24166/1/Could-Changing-Gut-Bacteria-Prevent-Celiac-Disease/Page1.html “According to Dr. Decker Butzner, a Calgary-based pediatric gastroenterologist, there are another triggering factor which we’ve never understood…[t]here is an environmental trigger.“ i,e. STRESS Have you been stressed of late? Stress is said to kill you well it also maims you. NCGS is that maiming of people who have eaten wheat without resetting their stress clock. Find out how you can reset your stress clock (my words). Also see this very well article on pregnancy. https://www.verywell.com/can-pregnancy-trigger-celiac-disease-562302 where they say quoting First Comes Baby, Then Comes Symptoms "Most women are diagnosed with celiac disease after at least one pregnancy — in fact, a comprehensive Italian study published in 2010 on the reproductive effects of celiac found that 85.7% of women received their celiac diagnosis following their first pregnancy." WE also know stress is a trigger for Celiac disease. https://www.celiac.com/articles/23506/1/Stress-Common-Before-Celiac-Diagnosis/Page1.html Join his friends who no longer suffer from heartburn, gas, constipation, diarrhea, IBS , UC, Chron’s and Ulcer’s etc. of NCGS/GERD. You too can be in remission in as little as six months if you follow this ground breaking discovery hidden in medical text books now brought to light about how to manage digestive stress from Pellagra. When he (God being his help) rediscovered Pellagra as a disease of TODAY now often Diagnosed as Celiac disease instead of one conquered 75+ years ago as the doctors teach. A brief history: over 4+ years ago after being able to eat gluten again after being Gluten Free for 4 years and suffering 30+ years before I received a diagnosis as Celiac disease I begun to realize I had low stomach acid instead. So now I speak about it freely and blog about it regularly with only modest success and why I participate on celiac.com to Educate those still suffering unnecessarily to help explain how Pellagra is often confused for many GI issues up to and including Celiac Disease in time – usually 10 years or more. *** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your diet or your prescribed medical regimen. After 4 years of research and 5+ years of GI symptom remission I am convinced more than ever that 90+ percent of the most common GERD/Gluten issues are related to sub-clinical presentation of Pellagra unrecognized in a clinical setting. So much so that I tell those who will listen. As I am fond of saying Learn from my mistakes. Honey is like knowledge sticky and sweet when good news comes. “This posterboy blog is just that storehouse of knowledge learned from life experiences. The blog’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. Feel free to ladle and dollop your life with the sweet stickiness of the truth found here. For honey like truth stick to you once in contact and you can’t just wash it away.” This posterboy blog is about my struggle to reach people yet only about 10 percent believe and are helped when they read these things though 95+ percent are helped when they treat their Pellagra symptoms with Niacinamide taking it 3 times/daily for 4 to 6 months. Education (this blog) is about raising the conversion rate so people don’t have to suffer any longer. I will go on telling those who will listen. How can they hear if no one tells’ them? Romans 10:14 (I speak as a man) Tell others about this blog post if you decide to try Niacinamide for yourself and see If it helps you. It will help others/them too most likely! At least it helps most of my friends that will/have believe/believed and tried it for themselves. Take the Niacinamide and get/be better in 6 months (begin BURPING) (w/o bloating I might add) for the first time in years IF EVER from Pellagra undiagnosed. No one seems to believe (or at least not many) becoming deficient in (a) vitamin or vitamin(s)/minerals will/can make us sick. What a novel concept. You would not think I would need to write a blog post to tell people that! Maybe it is not true in your case. But you won’t know if you don’t try it. All I know it has been true in my life! and Hundreds’ and hundreds’ of my friends. Thanks bee to God who helped me to see these things. 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.” Tell someone (share) is all I ask tell others is all I ask –when you are BURPING for the first time in years or (EVER) – tell a friend about this blog post “is all I ask” but don’t let the chain break with you. There a lot of fellow sufferers’ who still need help. I always say the number one mistake people make with Niacinamide is not taking it long enough (3 to 6 months 3/day in divided doses) but now I am going to amend that. The number one mistake people make with GI problems is the mistake of not taking the Vitamin in the first place. The 2nd biggest mistake is they don’t take it long enough! If you want to try and educate your doctor/friends and think he/she/they will listen tell them how Niacinamide helped you or some fellow who says it helped him but I was too scared to try it. Maybe they will listen to your better than they will/do me. *** 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 Niacinamide and his digestive/GI problems are in remission. And his difficult to help/treat patients who don’t respond to “popular” medicine’s like Linzess etc. are better for IBS-C. And have stopped the medicine because their symptoms are in remission. He has even given Niacinamide to his sister to help her Chrons symptoms’ though research bears this out people don’t (Heck doctors don’t even) well understand the connection. See this article entitled “Pellagra as the presenting manifestation of Crohn's disease.” https://www.ncbi.nlm.nih.gov/pubmed/7060914 (***Note: this is an update. I saw my doctor recently and he admitted as such. But I could see it in his eyes (and hear it in his voice) because it did not fit his paradigm (world view of Vitamins/medicine) he spoke only of her Chron’s being in remission. It never occurs too him that her co-morbid Pellagra is better and it (Pellagra) could be being misdiagnosed as Chron’s instead (and won’t/wouldn’t) even if I brought him the research.) But Vitamin(s)/Minerals especially Niacinamide and Magnesium don’t get the attention they deserve because Vitamins’ don’t have a USP today in this genetic age we now live in. They (drugs) are popular because they have drug companies who have the money to advertise them. I do not. I do not have a Unique Selling Position (USP). Nor do Vitamins these days! And I say too you too. Put your Pellagra symptoms into remission too! (Your Celiac diagnosis can remain your primary disease diagnosis) as the doctor's wonder why your (Pellagra misdiagnosed) symptom's are in remission. No body profits if you get better in 6 months or a year and you no longer need the Vitamin! We don’t’ get sick from being low in “a Medicine” to quote the frustrated pharmacist but a Vitamin. I usually end up giving Niacinamide away and often they (friends) give it back instead much like a Johnny Appleseed character. Such is the fear of Vitamins these days. See also the posterboy blog post on celiac.com why this is so. . . entitled it is time for a Vitamin Reformation; Why all the hate for Vitamin’s these days. 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. I am just trying to help those who still haven’t heard yet Pellagra is being diagnosed as Celiac disease today and your Pellagra undiagnosed/mistakeningly diagnosed as Celiac can be in remission from a Vitamin deficiency. If we follow most normal paths’ for adoption it will take another 20 years (a generation) for the medical community to accept Pellagra as the proper diagnosis. ****Note: I am only reporting what medical journals have concluded. It is just not well understood today one disease is being diagnosed as the other because it can take a generation for this knowledge to filter down to the clinical level. How do we know this??? Or can we? The International Journal of Celiac disease notes this association/connection. http://pubs.sciepub.com/ijcd/3/1/6/ Not only did/does the Journal of Celiac cite common symptom’s 58 percent of the time in Celiac and Pellagra but they also cite that Pellagra has been described in a Celiac Disease diagnosis. Now if the symptoms’ are similar it is easy to confuse one disease for the other and if not well understood they might be considered “exceptional” or, i.e., not well understood and discounted as the cause. I would argue that it should be the other way around if the majority (58 Percent) of the time Pellagra symptoms are described in a Celiac diagnosis it stands to reason that medical science is identifying the wrong disease. The math doesn’t add up. 58% is the Majority (primary/parent) disease and as such should be treated first. Pellagra has 3 faces that often confuse doctors today but 75 years ago they were able to diagnose this disease with only 3 symptoms the D’s of Pellagra. Dementia’s, Digestive Disorder and Dermatitis issues. Are You starting to see a pattern here? If it starts with a D then Pellagra a Niacinamide deficiency is involved. Quoting the Celiac Posterboy “These D’s a Celiac patient encounters are not the sign of several different diseases but one parent disease Pellagra with many children.” I could go on and on and on . .. but there is no need for that. I need to stop for now. Either you will believe and be helped or go on suffering needlessly if indeed Pellagra is the parent disease and GERD, IBS, UC, Chrons, NCGS and Celiac disease it‘s unruly children. 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.” ****Again this is not medical advice but it is too easy, simple and cheap not to try and see if it works for you . . . I have found it works for others. Remember Occams’ Razor. . . The Simple answer is a Vitamin. But convincing people of that fact has not been simple or easy. I can’t convince you either way. You will have to decide for yourself . . . I only know it help’s those (of my friends) who have tried it for themselves. Praise bee to God and I want other’s still suffering from Pellagra disease if the research is to be believed being diagnosed as Celiac disease to be the next to be helped Praise bee to God! But I know now you will have to discover it for yourself. I stand as your witness. I tried! Posterboy by the Grace of God, 2 Timothy 2:7 As always, “Consider what I say; and the Lord give thee understanding in all things” this included. **** I will update this blog post in a month to 6 weeks with Part 2 about how you can test these things for yourself (if I am not recovering (God forbid) from a medical procedure) depending on how and if my CT scan shows any blockage that might require a stent to be implanted like my brother had to have done. . . Otherwise I wish you all who read this posterboy blog post God speed! And good GI health soon! Praise bee to God if you are encouraged enough from this post to try the Niacinamide 3/day for 6 months for yourself.
In Part 1 I mentioned many of the GI issues diseases I think this might help and have seen it help. But most people only think of an “official diagnosis” and not co-morbidities in the same person. Treating your Vitamin deficiency lets you treat your co-morbidities. It is known as a 2ndary diagnosis in Sjorgen’s diesease as Pellagra has also been diagnosed with SJD for example. https://www.researchgate.net/publication/263324686_Pellagra_in_a_patient_with_primary_Sjogren's_syndrome Despite the conditions responding to Niacin(amide) --- Pellagra was still considered the 2ndary disease. This is more common than people realize often. You hear often “you” the average person doesn’t need to take a Vitamin but if you are reading this blog you are not average. People with Celiac disease and other GI problems are known to be low in a range of Vitamins. See this link for appropriate supplementation with a celiac diagnosis. https://www.ncbi.nlm.nih.gov/pubmed/24195595 Niacin(amide) was not mentioned in this study but should be added/studied since B-Vitamins are known to help Celiac’s. At 58% co-morbidity of Pellagra in Celiac’s there is better than 50/50 chance your symptom’s can be in remission in 6 months? If you are ONE of the many Pellagrins being diagnosed as Celiac disease today. Gluten free works actually summarizes this topic well. https://glutenfreeworks.com/blog/2017/07/18/niacin-vitamin-b3-deficiency-in-celiac-disease/ But still people are afraid to take a water soluble Vitamin that is known to help digestion problems. Are you Afraid of a Vitamin? You needn’t bee! Praise bee to God! I must always say *** 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 it helped me. And I think it can help you too and why I share for “Sharing is Caring”. 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 I mean this to be some kind of “Opus”. My story! Yours might be different. Now the onus is on you to try? What you can do is urge your doctor to have you tested for Pellagra (though I doubt very seriously you will test low). See this posterboy blog post that explains the difference in Primary and 2ndary Pellagra. https://www.celiac.com/gluten-free/blogs/entry/2119-a-devastating-delay-celiac-pellagra-and-the-implementation-clinical-gap-in-recognizing-one-forover-the-other-which-twin-to-choosesave/ Anyone who eats a protein rich diet will not test low enough to be diagnosed as a Pellagrin at least in the Western world. You have bee near death, an alcoholic or homeless to be diagnosed as a Pellagrin today or maybe an alcoholic homeless fellow who has severe Psorsias. . . might test positive for Pellagra if they knew to test for it. And why it usually shows up in war torn areas today because protein is limited in war. (and Alcoholics) as seen in this House MD episode on Celiacs called Forever because Alcoholics have poor diets and thus low in protein in their diets. https://www.bing.com/videos/search?q=house+season+2+episode+22+forever+daily+motion&view=detail&mid=C2050653028DE02DBDE6C2050653028DE02DBDE6&FORM=VIRE What needs to be done to change this oft over looked fact is a study with Niacin to see if it helps Celiac’s. See here where other B-Vitamins were shown to help Celiac’s. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html this study was only as to how it (B-Vitamin supplementation) effects homeocysteine levels in people diagnosed with Celiac disease. Not if taking a B-complex or specifically the Niacinamide version of Niacin could help treat or alleviate gluten antibodies in Celiacs with cross contamination. A double blind study would have to be done but could be effectively tested with some time and effort. This is only antidotal information with no confirmed medical research unless someone else takes the ball and runs with it. Plumbago you come to mind. But it doesn’t matter who it is. The time has come to test this hypothesis to see if it is a “working theory”. I only know it helped me and helps other I give the Vitamin B-3 as Niacinamide to . . . up to and including people who have had an official NCGS diagnosis. Which tells’ me it would help other Celiac’s too if they would try it (Niaciamide) 3/day for 6 months. Note: No Follow up is done at two years to see if they are in remission after cross contamination or if they have adhered strictly to a gluten free diet. But their clinical outcomes (symptom relief) appear to greatly improve at 6 months including re-introducing problem foods such as dairy which they now tolerate without GI distress. I have tried to be a witness to what I have experienced. (I speak as a man) that no other person Pellagin being diagnosed as Celiac disease instead would be in the dark about this fact. Romans 10:13-15 King James Version (KJV) 13 For whosoever shall call upon the name of the Lord shall be saved. 14 How then shall they call on him in whom they have not believed? and how shall they believe in him of whom they have not heard? and how shall they hear without a preacher? 15 And how shall they preach, except they be sent? as it is written, How beautiful are the feet of them that preach the gospel of peace, and bring glad tidings of good things! When you get the right/correct diagnosis (if Pellagra is correct/parent diagnosis) it’s unruly child Celiac will get better. See this posterboy celiac.com blog post. https://www.celiac.com/gluten-free/blogs/entry/2124-is-non-celiac-gluten-sensitivity-andor-celiac-disease-really-pellagra-in-disguise-in-the-21st-century-a-thoughtful-review-of-whether-to-supplement-or-to-not-supplement-by-the-posterboy-of-both-celiac-and-pellagra-a-fellow-sufferers-journey-to-peace/ I only know it is a devastating delay. To ignore one disease at the expense of the other. https://www.celiac.com/gluten-free/blogs/entry/2119-a-devastating-delay-celiac-pellagra-and-the-implementation-clinical-gap-in-recognizing-one-forover-the-other-which-twin-to-choosesave/ quoting the celiac posterboy again “A differential diagnosis is one of the best standard of medicine rarely practiced today and how specialists decide between competing diseases like UC or Chron’s or IBS or Celiac Disease and if I am right Co-Morbid Pellagra now forgotten for 75+ years since the “War on Pellagra” is now over according to medical professionals’ but sadly the battle rages on for at least for the potential 3 Million American’s who are now being diagnosed as Celiac disease today instead.” 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). What we fail to understand often with any diagnosis there is continuum of disease/symptoms. Yet we think of them as separate diseases Right? I have unwittingly become the Celiac and Pellagra Posterboy . Learn from my mistakes! I have made too many (mistakes) to count. Take as much honey (knowledge) as you can from my mistakes so bad (lack of knowledge) health will not sting your quality of life. 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/diagnosis’s from occurring. Now in this hypothetical case (which doesn’t exist yet or does IT? As a differential diagnosis the answer is a definite YES) 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. I share/write these posterboy blog post’s so that others might not have to suffer the same things’ I have again in the future someday. . . I pray soon! Now that you have the knowledge of my experience what will you do with it? Every hour/patient/person matters. And why I have tried diligently to educate other Celiac’s of this maddening fact. All those who have ears to hear may they listen! Feel free to read all my posterboy blog post’s if this pique’s your curiosity/interest but there is only so much in a/one blog post than can be explained but it really Is not necessary or visit the website/blog in my profile where I have told the same story hundreds of time that ONE fellow sufferer like myself may/might be helped by the same wisdom, I found God being my help, when I learned Pellagra and Celiac disease are Siamese twins and separating one (supplementing one to death) will kill the other (cause the other to go into remission). And I believe you can too! Praise bee to God! 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 (fellow sufferer) which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” Posterboy by the Grace of God, EPILOGUE A simple self-test is to prove this works for you and your friends. It is to take Niacin as NIACINAMIDE usually one 300 count bottle is enough for a 3month supply. I call it the NIACINAMIDE CHALLENGE. You and a friend/family member begin taking it at the same rate. Whatever that rate is – is fine. But it needs to be at the same rate – consistently. 2/day or 3/day works (i.e., with each meal) works for most people. If so two things will happen for you/them (if Pellagra is indeed Co-Morbid presenting as Celiac Disease) then you/they will begin BURPING for the first time in years and years (if at all) and their stool will begin to SINK to the bottom of the bowl. ***Not twenty minutes after eating something with bloating or burping with carbonation/soda or beer etc. but BURPING 2 hours after a meal without the bloating you used to have. It will start slowly and then be your new normal. The burping within a month of each other will match up with your stool beginning to SINK where it did not before (or it did for me). A witness of two is “true”. Usually it takes 3 to 4 months taking the Niacinamide 1/day to notice these results Usually it takes 2 to 3 months taking the Niacinamide 2/day to notice these results Usually it takes 6 weeks to 2 months taking the Niacinamide 3/day to notice these results If these are your results then together ya’ll have completed a self-test to confirm Pellagra was causing your GI problems. If it is the Vitamin making the difference your GI symptoms’ will improve. It is as simple as that. I would recommend a 6 months regimen for most people. Two 300 count bottles equal $50 Dollars worth of a B-Vitamin. As I called this an open a letter to the many GI sufferers etc. It doesn’t matter what part phase (spectrum) of the disease you are in it will (should) get better. GERD, IBS, UC, NCGS or even Celiac disease if (low Niacin(amide) was the cause) you will have a cause and effect reaction. If you had Pellagra Co-Morbid and your GI improves with supplementation. This almost always works if you are not now taking PPI’s like Nexium or Prilosec etc. . . . If you are taking PPI’s then your “Way Back” may be a little longer but the trip back is the same. ****Again this is not medical advice but it is too cheap not to try and see if it works for you . . . I have found it work for others. ****Note: I am only reporting what medical journals have concluded. It is just not well understood today one disease is being diagnosed as the other because it can take a generation for this knowledge to filter down to the clinical level. Again a “Witness of Two” – you Both having the same reaction to the Vitamin proves Pellagra was causing your symptom’s and the doctor’s don’t recognize it today in a Clinical setting. The Journal of Psychosomatics says its well and I can’t say it better. https://www.sciencedirect.com/science/article/pii/S003331821070668X?via%3Dihub quoting the abstract Pellagra: An Old Enemy of Timeless Importance Author links open overlay panelThomas M.BrownM.D. Show more https://doi.org/10.1016/S0033-3182(10)70668-XGet rights and content Background “In the United States, pellagra is infrequently reported. Yet this disorder does occur among malnourished persons. Objective The author seeks to clarify diagnosis and treatment. Method The author describes various presentations and effects of this disorder. Results Knowledge of classic and atypical presentations can assist in making the diagnosis. The author presents two cases of pellagra that exemplify the classic and atypical presentations. Conclusion The typically robust response of the disorder to physiologic doses of niacin can assist in confirming the diagnosis.” *** 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 am your witness people, have and do get better using this technique realizing a mistake has been made in your/their diagnosis. It is the time honored medical “Second Opinion” AKA a Differential Diagnosis. Isn’t it about time to see if supplementing with Niacinamide will help your co-morbid Pellagra symptom’s to see if your Celiac disease diagnosis was arrived at in error – no matter well intended has keep you from getting better from Pellagra. Quoting an old friend J. Dan Gill when he talks about the power of Truth to Free us! Where/when he (Dan) talks about the difference between Truth and Error. “The Truth is Always Better The Truth, whatever it is, Is always better than error, Whatever it is.” By J. Dan Gill The truth is when an error/mistake is made. Admit it and move on to the correct/better diagnosis so you can then get better! And we have known how to treat Pellagra for a 100+ years but this generation having not seen it in their lifetimes have forgot how to diagnose it! When they see it in its earliest forms. .. they do not recognize it in a clinical setting anymore! Those that have ears to hear? Listen! You can get better from Co-morbid Pellagra. SADLY! Few listen. But some (Celiac’s) have heard (listened to) the good news that Pellagra is reversible and have gotten better. Don’t be the Last! ****Again this is not medical advice but it is too easy, simple and cheap not too try and see if it works for you too!. . . I have found it works for others. . . not already taking a Proton Pump Inhibitor (PPIs) like Nexium or Prilosec etc . . . Praise bee to God! To those who have listened and got better! Just trying to help those still suffering (I believe) unnecessarily. 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.” Posterboy by the Grace of God, 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.
Is Non-Celiac Gluten Sensitivity and/or Celiac disease really Pellagra in disguise in the 21st Century? A thoughtful review of whether to supplement or to not supplement by the Posterboy of both Celiac and Pellagra: A fellow sufferer's Journey to Peace
Posterboy posted a blog entry in Posterboy's BlogIs Non-Celiac Gluten Sensitivity and/or Celiac disease really Pellagra in disguise in the 21st Century? 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. http://pubs.sciepub.com/ijcd/3/1/6/ 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” http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ 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/gluten-free/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,
Prologue I never know what to call a post. What Else Could it Be; Co-Morbidity in Celiac disease and what else could be causing your Celiac like symptoms or I had Celiac Disease and developed Pellagra. This is my story yours may be similar. I have tried to write as much as I could of this beforehand to summarize some of my experience and research since I was first serology confirmed a Celiac and why I think Pellagra explains if not all the complications a Celiac develops at least many of them seem common in undiagnosed Pellagra but I find formatting and links can be a challenge. This is not meant to be an answer to all your questions but a beginning, posterboy by God’s Grace. See post that follows “I had Celiac disease and developed Pellagra”. Good luck on your journey. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things”. I had Celiac Disease and developed Pellagra I try and educate about how Pellagra can be confused for Celiac disease and/or GI problems like IBS, GERD, Ulcer’s, UC etc. after having received a Celiac diagnosis and my symptom’s improved greatly after taking Niacinamide (the non-flushing form of Niacin). And almost without fail people do not see the connection. They say but I have … . fill in the blank. They don’t see the connection. But if I say it this way maybe it will help you “I am a Celiac who developed Pellagra” or fill in the blank … . heartburn, IBS, UC, Chron’s etc. I named this post this because another board/forum member said as much in a thread post on this forum and it struck with me. She had the digestive problems of a Celiac but also the dermatitis issues of DH and her itching got better after taking Niacin. What we fail to understand often with any diagnosis there is continuum of disease/symptoms. Since this happens gradually you develop heartburn first then you have IBS, and Constipation and diarrhea then maybe an ulcer etc we don’t often see the connection. But all along it was the same disease in a more pronounced condition. If we catch it early enough say at IBS then the ulcer or UC might not develop. When we think spectrum of disease it helps us to understand these diseases’ can be and are more related that we often understand. They are all bound by STRESS. Do not all these conditions worsen when you are stressed does not the heartburn turn into IBS i.e. your constipation and diarrhea flare up? Yet we think of them as separate diseases Right? No there is a continuum of disease bound by STRESS and TIME. The longer the stress the more your symptom’s Right! You just haven’t stopped to think about the relationship. Relationship and time is important to a proper diagnosis. So how are these related? Our mucus membranes are always in a constant state of repair either of repairing or rebuilding what is broken or maintaining our bodies defenses. This takes energy and lots of it and one is not able to make enough energy to repair the lining of our stomach without enough Niacin and Pellagra develops. I am not even saying I have been cured of Celiac disease. I say my GI symptoms are in remission which leads me to Pellagra as a cause and effect relationship of stress and our environment — Epigenetics. I am saying I was/am a Celiac who developed Pellagra. The International Journal of Celiac disease notes that both Pellagra and Celiac disease does often occur in the same person. How do we know this? The Journal of Celiac in an issue entitled Celiac Disease Intestinal Heart and Skin Interconnections http://pubs.sciepub.com/ijcd/3/1/6/ when listing common aspects of both diseases’ says and I quote “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.” Which also explains why a Genetic disease can increase in two or three generations because our stress changes our genes. There is a trigger. Stress — it is not your day to day stress. We can handle all that kind of stuff but TRAUMA lasting 3 or 4 more months at a time. Think when Celiac disease was first studied as a Disease? It was during and directly after WWII and I dare say a stressful time to say the least. Not to mention all the energy needed day to day to just survive. Europe almost starved after the war. So much so he U.S. government had to step in and help deliver/air drop humanitarian aid to Europe. It was called the Marshall Plan named after the man who devised the relief plan and it is credited with keeping Europe alive after WWII and averting another possible world war because of the infighting that would have developed from a starving Europe. 3 to 4 months is approx. the exact time we can store B Vitamins. Anything that triggers the fight or flight high energy response (TRAUMA) that depletes our bodies reserve’s. Stress is coincidently what Niacin helps us control. It (Niacin) helps control our stress response’s in the body without which cellular disfunction happens (are membranes brake down). Like the alternating constipation and diarrhea you have had for years if you have developed Celiac disease. Things like a Car Accident, difficult divorce, injury to our kids, extended care giving, surgery etc. can and often does trigger GI problem’s. And yes the stress of pregnancy. And it (STRESS) is common with with/before a pregnant lady gives birth triggering heartburn. A good example is pregnant women in their 3rd trimester often develop heartburn that’s goes away when the child is born. Those who are predisposed continue to have heartburn and GI problems because their body couldn’t meet their need. Half of pregnant women develop heartburn during pregnancy that goes away in all but about 1/3 of those who get heartburn when the child is born. Think of Heartburn as infant Celiac disease if it helps you to think in these terms. The older/longer the heartburn persists or the more GI symptom’s (heartburn/GERD/IBS, Constipation, diarrhea, ulcer etc) reoccur the more serious the conditions and diagnosis becomes. The genetic component is that 1/3 are predispose to high Niacin consumption when stressed. It is those1/3 of us who had Pellagra and Celiac disease developed is who I am trying to help. But it should be noted up and until your Celiac diagnosis things like the Ulcer, UC, IBS etc can/could be helped also if Pellagra is the Parent diseases and all these other diseases are its children. Co-Morbidity is the term. A B-Vitamin deficiency can be inherited but does not have to be permanent. It is a reversible condition. See this new research that ties eczema in babies to low Niacinamide in the mother during pregnancy. Nicotinamide is usually the way Europeans spell Niacinamide. Both names refer to the same amide form of Niacin. https://www.sciencedaily.com/releases/2016/09/160923092924.htm The very definition of a Vitamin (especially in the case of B vitamins) a vital (life giving) nutrient/substance needed in a minimum amount without which we become sick. Your continuum of diseases are completely reversible if your symptom’s look like Pellagra (digestive, dermatitis and dementia’s) in nature and your respond (BURP in 3 to 4 months) to Niacinamide you might have Pellagra and the doctors have not figured it out in a clinical setting (they are sub-clinical) yet or at least you (may) have Pellagra and Celiac Diseases Co-Morbid. If one is critically low in Niacin the 3 D’s of Pellagra (Dementias, Dermatitis’s, and Digestive Issues) show up. Really there are 4 D’s more on that latter but we are trying to catch Pellagra before it gets that far. The International Journal of Celiac Disease notes this co-morbidity when they note in 58% of Celiac -- Pellagra ALSO occurs. See this link http://pubs.sciepub.com/ijcd/3/1/6/ Quoting their paragraph 3 on the Co-Morbidity of Celiac and Pellagra together 3. 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]. “ 58% of the time (that is a majority folks) Celiac’s go on to develop Pellagra too! Or is it really the other way around? Have you had Pellagra all along and now you have developed Celiac from it (Pellagra) undiagnosed. The later may be more true than you know. Ask your friends if they have ever heard of Pellagra. I dare say it a low percentage that knows Pellagra a once rampant disease especially in the rural south can cause many of the GI problems you are now experiencing as a Celiac disease patient or even the Non-Celiac Gluten Sensitivity (NCGS) patients that have not yet received a Celiac diagnosis. And it maybe a lower percentage today that know what Pellagra (or even that they could have it) is than have heard of Celiac disease or think they have Celiac disease instead. Think beri beri, rickets, scurvy etc all complex diseases completely forgotten about today that were/are completely reversible conditions. As Dr. Heaney points out about Pellagra today! That as Creighton’s University Dr. Heaney says “In the United States, at least, Pellagra is a disease of the past – fortunately – and it is doubtful today that most health professionals would recognize it if a case happened to come to their attention.” See Dr. Heaney’s Professor of Medicine post here at this link http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ The knowledge of Pellagra (if you have ever heard of it) is in that same state of forgotten diseases now thought relegated to the history books. If you have Pellagra co-morbid then you just have to take a Vitamin to get rid of this morbidity. This is a summary of my 10 year journey. I researched these things for 3 to 4 year (2 Tim 2:7) before I had the courage in my conviction to test this Pellagra theory. But I think most people would rather hear from some who has suffered like them and has been able to help themselves. This is not theory anymore for me. It is my story. 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 or long enough. It should be taken UNTIL you are burping. Most people will burp when taking Niacinamide in 3 to 4 months or less taking it 3/daily — ie with each meal. What do I mean by burping? This confuses some people sometimes. I don’t mean the little burp you get with drink some carbonated beverage or burp a little in the first 20 minutes after eating but also are bloated. But your new normal BURPING the natural order of things burping – The burp will come later after the meal the longer you take the vitamin. Burping will occur the more frequently the less you eat. Soon water will cause you to burp -- Burping without the bloat and distension (pain from gas) that comes later. When your stool begin sinking your body is digesting the carbs and proteins that were causing you the backwash (heartburn/GERD/IBS) before when you only burped a little or occasionally or when you drank something carbonated. Now BURPING will occur two hours after you ate something. Long after you have finished your meal you will burp if you have taken the Niacinamide 3/day for 3 to 4 months at a minimum. Dr. Prousky proved this 15 years ago this past November that Niacinamide treats digestive problems. http://www.yourhealthbase.com/database/a124b.htm Yet 15 years later people still are bemused when you mention Pellagra let alone that Pellagra could be contributing to your Co-Morbid Celiac disease. I for one will tell those will listen. I am a Celiac who developed Pellagra. Learn from my mistakes so you don’t have to repeat them and get your doctor to test you for a Niacin deficiency. Pellagra once rampant early in the 20th Century is now known TODAY as Celiac disease in the 21st Century (I believe) or at least in a good majority of cases could be. To paraphrase William Shakespeare “Disease by another name hurts just as much” and maybe more because if you get the right disease you can get better! You know have the power to help yourself forum reader (because knowledge is power) the question is what will you do about it? This blog post is a store house of 10 years of research learned from life experiences. The blog’s author has been stung so you don’t have to be. Learn from my mistakes. 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 (knowledge) found/ gained today. For honey like truth stick to you once in contact and you can’t just wash it away. Don’t let them the doctor’ almost kill you before you are willing to take a Vitamin to see if it is really the Co-Morbid Pellagra as the International Journal of Celiac Disease notes that could be causing your Celiac symptom’s in the MAJORITY of Celiac patients if the International Journal of Celiac disease is correct. Quoting again from the IJCD “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 .” See this link provided again for easy reference http://pubs.sciepub.com/ijcd/3/1/6/ Stop the madness! Admit the MAJORITY of Celiac Patients today are Co-Morbid with Pellagra and if you treat the co-morbid disease you can get better from that morbidity. The Celiac Posterboy might say “(Unfortunately) for most patients it (Pellagra) is not recognized as Disease TODAY! By their admission (a professor of medicine/health professionals/doctors) Pellagra is OMITTED as a disease in most doctor’s differential diagnosis TODAY!” If you have (a) Celiac disease diagnosis then you have been stung with/by this ignorance. That as Creighton’s Dr. Heaney says “In the United States, at least, Pellagra is a disease of the past – fortunately – and it is doubtful today that most health professionals would recognize it if a case happened to come to their attention.” See Dr. Heaney’s Professor of Medicine discussion about why Pellagra is not diagnosed today here at this link http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ This blog post is about the ignorance (of) Pellagra cost’s you when the doctor’s diagnose you with Celiac Disease/NCGS when 58% of their patients is/are Co-Morbid with Pellagra and they get the wrong “key” diagnosis. **** 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 friends have found if you take it (Niacinamide) like an antibiotic (UNTIL BURPING) and your stool SINK then 95% of your GI stress will be in remission. You could still have other things that are bothering you but it won’t be Pellagra. If you take fiber and still have GI trouble then eliminating supplemental dietary fiber for 30 days (like you did to see if gluten was your’ problem) might help you figure out whether the fiber is helping or hurting your GI problems. People do have bad reactions to fiber sometimes that can be confused for IBS problems and unless you try eliminating it for 30 days you won’t know for sure if it is causing or contributing to the remaining GI problems you might still be having after taking Niacin until burping if any. As I am fond of saying “To Educate is to truly Free”. But do not do as I did! Learn from my mistakes. DO NOT take Niacin or Niacinamide or any form of Niacin UNTIL you have your doctor’s test you for it (Pellagra). If you notice the IJCD link these were clinical observations only. Quoting the IJCD again “It is the first description of celiac disease . . . .and Pellagra in the same person, however, only associative linkscan be established, but not cause and effect relationships. Unfortunately, the patient was not diagnosed biochemically as pellagra and died before gluten free diet was initiated.” You probably know this by now if you are a Celiac or even a NCGS patient the diagnosis rate for Celiac disease can be a horrible and if you have Pellagra it is even worse because the doctor’s like Celiac disease 15 or 20 years ago are not even looking for it today. One more test needs to be done to differentiate Pellagra from Celiac and it is not being done today as Dr. Heaney correctly noted. Doctor’s don’t know to look for it (Pellagra) much less in a Celiac patient. See this link to the Merck Manual a commonly used traditional desk reference for Physician’s when they need to look up a diagnosis. http://www.merckmanuals.com/professional/nutritional-disorders/vitamin-deficiency,-dependency,-and-toxicity/niacin Quoting from the Merck Manual “If available, laboratory testing can help confirm the diagnosis, particularly when the diagnosis is otherwise unclear. Urinary excretion of N1-methylnicotinamide (NMN) is decreased; < 0.8 mg/day (< 5.8 mcmol/day) suggests a niacin deficiency.” No, doctors don’t know everything they have to look things up from time to time too. And when they do look up Pellagra when you ask them to test you for it the way some people on this board went to their doctor’s to have them test for Celiac disease instead of accepting as Gemini on this board said and say you had IBS instead “I Be Stumped” they learned/were taught by their patient’s that Celiac is not as rare as once thought. And neither is Pellagra. Quoting the Celiac Posterboy “Pathology presumably would qualify the Pellagra patient as a Celiac Patient if the Pellgarin was first diagnosed as a Celiac first as often is the case TODAY!” Why is this? The pellagra disease blog explains why this is https://pellagradisease.wordpress.com/ Quoting Niki Frost “Since pellagra is (thought to be my words) such a rare disease today, few people recognize it based on their symptoms alone (any of the three D’s: dementia, dermatitis, and diarrhea). Pellagra patients are consequently (constantly being my words) referred to specialists in fields that are ultimately unrelated to the underlying nutritional deficiency and metabolic nature of the disease.” 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. Pellagra when it was first named means rough/sour skin in Italian and people forget that today. 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. But unless you are tested for it your doctor’ won’t know to look for it in their next Celiac patient because they do not know to look for it in GI patients today remember the war on Pellagra ended 75+years ago so they don’t look for (see) Pellagra anymore in a clinical setting unless you are in a subgroup like being an alcoholic etc . The same way they didn’t or might not of known to test their IBS patients for a Celiac diagnosis 10 or 15 years ago. I am not saying this will help you the way it seemed to help me. But I am saying have your doctor verify these things for you before doing these things because if you are a Celiac that has developed Pellagra also then it needs to be documented. If you want to read more about my story search for the posterboy on this board to read my other forum threads or visit the website in my profile. I have specifically left out dosage amounts because the frequency you take a B-Vitamin is more important than the amount you take of it. Because B-Vitamins are water soluble 2 or 3 hours later if one is deficient in that Vitamin then the body can absorb more of it. So taking higher doses don’t necessary help you any more than lower doses. They (higher doses 500mg) can be easier to find especially if you are taking it (Niacin) for cholesterol management but it doesn’t help you any quicker than smaller amounts more frequently and higher Niacin causing flushing (which can be mitigated to some degree by taking Niacin with food) where the Niacinamide form doesn’t. In fact taking smaller amounts frequently 3/day with meals will help approximately 40 percent faster than one larger 500mg capsule/tablet only once daily. And why if given a specific amount and you retain it (is low in the urine) is a sign you are low in Niacin. I do prefer the Niacinamide form because it is a naturally flush free form. The Merck Manual notes this quoting “Nicotinamide is usually used to treat niacin deficiency, because nicotinamide, unlike nicotinic acid (the most common form of niacin ), does not cause flushing, itching, burning, or tingling sensations. Nicotinamide is given in doses in doses of 250 to 500 mg po daily.” But a Slo-Niacin can work just as well. The Townsend Letter makes note of this in their Feb/Mar 2003 edition. http://www.townsendletter.com/FebMar_2003/inositol0203.htm This will be a cycle. You will take it until burping 2 hours after you finish your meal and your stool sinks where before it floated and even water now causes burping without bloating or gas or distension. It might be 3 or 4 months for some people or it might be even 6 months or longer for some people. But it is a cycle. Usually people feel better when they begin burping for the first time in years and their stool now sinks when before it always floated. I do not now take Niacinamide and haven’t for several years since my symptoms’ are in remission. I stopped taking it when I had rebound acid reflux. By that I mean I begin to have acid reflux symptoms when I had no food in my stomach that when away when I ate something. Timeline is important in any diagnosis. All heartburn is not equal. IF your stomach acid was HIGH as you often hear then eating food (carbs, greasy things or your other triggers) wouldn’t bother you because it would only weaken it. BUT if it is low to start with then food will WEAKEN our/your acid so that you lose the food fight you are in and things (carbs/fats) become to ferment, rancidify and cause heart burn. The excess pressure from fermented carbs push open the trap door allowing the low acid you have burn the lining of your esophagus. TRUE heartburn from too HIGH acid happens between meals when there is no food in your stomach to tamp it down and will occur if you take Niacinamide too long and how I knew I needed to stop taking Niacinamide. When low in stomach acid for too long in time this can lead to Non-Celiac disease first and with enough injury to Marsh lesions qualifying you for diagnosis as a Celiac candidate/patient. How do we know this? Low stomach acid has now been linked to a probable cause of damage to the Small Intestine before and/or occurring with a Non-Celiac Gluten Sensitivity (NCGS) or Celiac diagnosis. Celiac.com reports these findings http://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html Note how the researcher’s starts the article “Rates of celiac disease and the use of drugs to inhibit the secretion of stomach acid have both increased in recent decades. A research team recently set out to explore the association between anti-secretory medication exposure and subsequent development of celiac disease.” If these medicine are lowering stomach acid what cause effect relationship does/ could this have on Celaic/NCGS diagnosis is what they are postulating. They go on to say without being very technical (read the whole article for yourself) that “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.” . . .. Summarizing their findings “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”. Now the term causal is not used lightly. To prove causal is much harder than casual (occurring with) like the 58% of Celiac who are also casually observed as having Pellagra. Gluten Free works summarizes a casual association of a Niacin deficiency very well at this link https://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/ They only note a casual association only noting similar symptoms occur in Pellagrin’s too. Quoting “ Inadequate levels of niacin slows metabolism and impairs functioning of the brain and nervous system, digestion, skin, DNA repair and other key cell processes, and steroid and sex hormone production. Severe deficiency of niacin causes the disease pellagra.2 “ I can not prove that Niacin helped me because I did not know to test for it or have the doctor test me for it but you can teach your doctor to look for i it in you if you are an IBS, NCGS, or Celiac patient by sharing the information in the Merck Manual with him/her. To prove causal you will have to have your doctor test you for a Niacin deficiency verifying the International Journal of Celiac disease casual observation that the majority of Celiac are co-morbid with Pellagra establishing if not a causal link that it at least contributes to your concomitant GI conditions in at least the 50 percent of Celiacs’ who are low in Niacin and don’t know it. Taking the Niacinamide as the Merck Manual notes in their key points for doctors can confirm the diagnosis. Quoting “Use nicotinamide/Niacinamide to treat the deficiency; a favorable response can confirm the diagnosis.” If you want to research more about Pellagra and how it can present as so many different diseases and its clinical presentation(s). I say presentation(s) because if it begins with a “D” i.e., dementia, dermatitis or Digestive Disorders(s) (I added the S to Digestive Disorder because I think it speaks to the spectrum of diseases) that Pellagra can and is often confused for in modern medicine. And could be added to dementia(s) and dermatitis (s) see above about depression and Celiac and Pellagra meaning rough/sour skin in Italian and the Hindai link below to do more research on Pellagra if this blog post is not enough to answer all of your questions. Read this great Hindawi article linked below for a great synopsis of Pellagra https://www.hindawi.com/journals/cggr/2012/302875/ where they pose the question what role does Pellagra play in contemporary disease (today) In one of their breakout paragraphs talking about Pellagra today! They discuss how Pellagra is still prevalent today in contemporary disease pathways entitled “Is Subclinical Pellagra Relevant to Contemporary Disease?” And they list a dozen plus ways it is and I whole-heartily agree and I hope you do too after reading this post. And doing some of the research listed therein. It bears repeating though I said it earlier **** Note: 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. Good luck on your journey and I hope it helps you the way it seemed to help me. Posterboy by God’s Grace! 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Blessed are those who will hear and take a Vitamin for their health or at least have their doctor check their Vitamin levels so they can get better from that morbidity if indeed as the International Journal of Celiac disease notes – Celiac’s are co-morbid with Pellagra in the Majority of celiac patients and the doctor’s don’t know yet to test for it but by having your doctor test your urine for low levels of Niacin it indicates you are retaining Niacin to maintain and repair your membranes the doctor can treat you for this morbidity a sign of undiagnosed Pellagra today.
To All those who have had other disease diagnosis's before your Celiac Diagnsosis, Someone more experienced on this board might set up a poll to see how many of the tags in the thread apply to those who have received either a celiac disease or NCGS diagnosis for those who read this board. See this new research as posted on Celiac.com today http://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html?utm_source=phplist1864&utm_medium=email&utm_content=HTML&utm_campaign=Celiac.com+Update%3A+Can+Some+Celiac+Disease+Be+Treated+with+More+than+Just+a+GFD%3F A survey how many diseases other than Celiac disease were you diagnosed with before you received your Celiac Diagnosis? Or what other disease(s) do you also have as a result of either not being diagnosed with Celiac disease sooner or that are occurring with (Co-Morbid) with your Celiac diagnosis: A Survey/Discussion of how Co-Morbidity i.e., Pellagra might explain some of the GI problems you might be experiencing with/as a Celiac patient. I know of at least one other person on this board who has shown symptom improvement when using Niacin (best taken in the Niacinamide form) a harder to find flush free form that is often used in skin creams to treat dermatitis issues that might be confused for D.H. among Celiac sufferer’s. I was wondering if others’ have used it (Niacin in the Niacinamide form) for symptom relief for their GI problems. I find among my friends who try it they experience much better control from contamination issues once the Vitamin induces/causes them to burp. Has anyone else experienced similar results? Am I alone? Or would you be willing to try Niacinamide to see if it might cause burping and improve CC issues for you too the way it has me. If so please join the discussion and comment. Posterboy,
No matter how strict my diet is, I seem to loose too much weight, it almost always is worse around this time of year...October-November. That happens to be when I was first diagnosed with cancer 10 years ago (I was 20 years old), now I am 30. I have gotten married which supposedly would put on a couple pounds right?? The old saying goes something like, once you settle down your tend to start gaining weight. Well, not for me evidently. I've had two kids too. Got really heavy for me, went from 118-170 with my first, almost that for my second. BUT STILL I have lost my breast fat, they are less than an A cup, my periods are wacky still, I've been trying to regulate this obnoxious phenomenon of turning into a 12 year old little girl again with progesterone cream, applying it everyday. Was suppose to get hormone therapy after cancer treatments but have read many negative experiences of that with unwanted side affects. Then got diagnosed celiac soon after cancer treatments were over, got hormone tests three times since then and they have always been wacky! The only hormones that are not affected are the testosterone and the DHEA. SO I've been reading more, I don't have Hashimotos, I just don't meet the symptoms. I might have Crohns but I'm already doing the best I can for that. My thyroid checked out okay from tests done in the past when I had much worse symptoms then now. I've had a full body MRI when I was 20 and nothing extra was found invading my important organs, e.a. tumors around the pituitary or ovarian cancer. Not really finding a realistic direction to search in here. Anyone have this experience? Anyone have suggestions to research? Anyone been through hormone therapy successfully and what side effects/experiences did you have during/afterward?