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Found 22 results

  1. Open 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.
  2. Celiac.com 09/26/2018 - Non-celiac gluten sensitivity (NCGS) is a clinical syndrome marked by both intestinal and extra-intestinal symptoms that respond to the elimination of gluten-containing food and the adoption of a gluten-free diet. A team of researchers recently set out to review the diagnostic challenges surrounding non-celiac gluten sensitivity, and to summarize recent advances in research and provide a brief overview of the history of the condition for the benefit of professionals working in gastroenterology. The research team included Giovanni Casella, Vincenzo Villanacci, Camillo Di Bella, Gabrio Bassotti, Justine Bold, and Kamran Rostami. They are variously affiliated with General Practioner National Health Italy; the Institute of Pathology Spedali Civili Brescia Italy; the Pathology Department, Carate Brianza Hospital, ASST-Vimercate (Monza Brianza), Italy; the Gastroenterology and Hepatology Section of the Department of Medicine at the University of Perugia School of Medicine in Perugia, Italy; the Department of Gastroenterology Milton Keynes University Hospital, Milton Keynes, UK; and with Allied Health and Social Sciences, University of Worcester, UK. The researchers searched academic databases such as PubMed and Google Scholar using key words like ”non-celiac gluten sensitivity,” “gluten related disorders,” and the studies outlined in reference page were selected and analyzed. Clinical opinion generally holds that NCGS is best diagnosed by ruling out celiac disease and wheat allergy. Currently there is no blood test that can pinpoint NCGS. The underlying causes of symptoms in NCGS patients is poorly understood. However, there have been a few recent insights. Professional estimates of NCGS rates currently vary between 0.6 and 6%. Gastrointestinal symptoms of NCGS overlap slightly with those of irritable bowel syndrome. Researchers are currently investigating the histologic characteristics of NCGS, which range from normal histology to slightly elevated rates of T lymphocytes in the superficial epithelium of villi. Positive response to gluten free diet for up to 6 weeks, followed by a recurrence of symptoms after a gluten challenge, is still the best confirmation of NCGS. The Salerno expert criteria may help to accurately diagnose NCGS, especially in research settings, but isn’t particularly useful for diagnosis in clinical practice. Source: Gastroenterol Hepatol Bed Bench 2018;11(3):197-202).
  3. Celiac.com 05/30/2018 - One of the key aspects of non-celiac gluten sensitivity (NCGS) is that patients are diagnosed partly by the absence of celiac disease. That is, patients with NCGS, whatever their symptoms, do not have celiac disease. But could those patients still have some kind of gut damage, or permeability issues? Do people with non-celiac gluten sensitivity have distinct duodenal histological features? Researchers are seeking a better understanding of this still undefined condition. Some researchers have suggested that histology may play a key role in NCGS, but there is still no consensus. A recent review by Bardella et al. revealed that histology is not always reported in NCGS studies, and exclusion of celiac disease is generally done by showing negative serology and/or genetic typing. In June 2015, researchers published what is now called the Salerno Experts’ criteria, which proposes a double (or single)-blind, placebo-controlled, (DBPC), crossover gluten challenge as the gold standard to NCGS diagnosis In order to investigate histological findings of people with suspicion of NCGS, we retrospectively evaluated duodenal biopsies of a cohort of patients undergoing clinical diagnostic algorithm for NCGS as proposed by the Salerno consensus. The research team included B Zanini, V Villanacci, M Marullo, M Cadei, F Lanzarotto, A Bozzola, and C Ricci. They are variously affiliated with the Gastroenterology Unit, Department of Clinical and Experimental Sciences, University of Brescia, Viale Europa 11, 25123, Brescia, Italy; and with the Institute of Pathology Spedali Civili, Piazzale Spedali Civili 1, 25123, Brescia, Italy. Their team’s main goal was to underline that the peculiar IEL distribution and the increased eosinophil count may represent a valid warning that help to identify patients with NCGS, given the absence of serological markers for NCGS. The team also performed a CD3 immunohistochemical evaluation of T lymphocytes confirming that the IEL numbers were normal, but their distribution is peculiar, as noted by the clusters of T lymphocytes in the superficial epithelium and linear disposition of T lymphocytes in the deeper part of the mucosa above the muscularis mucosae. They also note that their failure to fully match study subjects with placebo challenge is a limitation of this study, but stress the current uncertainty of the actual clinical diagnostic algorithm as supported by recent reviews of the literature. The team’s observations led them to note that histology may play a similar role in NCGS diagnosis as it does in celiac diagnosis. Researchers do know that, unlike with celiac disease, there is an absence of damage or change to intestinal mucosa in patients with NCGS, especially an absence of villous atrophy. In addition, the morphological exclusion of celiac disease is a crucial assessment, because some patients classified as NCGS show increased duodenal IEL count (> 25 IELs/100 enterocytes), corresponding to Marsh I, or grade A lesions of celiac histological classification. To properly diagnose NCGS, the team says it’s very important to confirm these features, to rule out any type of organic malabsorption diseases, and to definitively rule out celiac disease, via a negative celiac disease serology. Taken as a whole, the team’s results provide evidence that both intraepithelial lymphocytes and eosinophils play a role in the physiopathology behind NCGS. They are calling for more studies to confirm their findings and to determine whether the results they observed were specific to NCGS. Source: Virchows Arch. 2018 Apr 4. doi: 10.1007/s00428-018-2346-9
  4. This is my second thread within a few days, sorry it is long! My biopsy results came today, exactly 6 weeks after the endoscopy. They were "reported as normal." And I am honestly devastated. I've been crying all day. I needed those samples to come back positive, because I cannot - no, I will not - go on like this anymore. Some background: I had panic attacks in 2011 that eventually had me hospitalised with a heart rate of 170. After leaving the hospital I noticed I had constant indigestion and light headedness, symptoms that they assured me were due to the heart rate. When things calmed down, they said it was the beta blockers. After coming off the beta blockers, I started questioning my doctors why I had indigestion, acid reflux; why I was now light headed in the cinema, squinting and holding my head from the loud noise; why I was now sensitive to the sun, to light, to heat; and why I had symptoms of IBS. To cut a long story short, I've been getting treatment for IBS and especially the reflux since 2012, with absolutely no success. I've had every test and I now have a hiatal hernia and acid/bile in the esophagus constantly. I've also had muscle pain and severe weakness, and joint pain. After writing my doctor a letter last May, he suggested testing for celiac, as all my symptoms fit and my father had actually been found celiac positive in his last blood test, but my dad had no idea about that until very recently. I've had three blood tests - all negative. I've had a biopsy - negative. And I've been eating copious amount of bread and wheat for many months, and have never felt worse. The doctors tell me that the reflux will just stop on its own one day. I don't think that ever happens. I mentioned that my father had been diagnosed with M.E/Chronic fatigue syndrome in 2000, and that for a long time we've wondered if I might have inherited it. They didn't really say anything to that. I know it's not good to have celiac disease, but it has treatment, and it has hope. There are worse things to be diagnosed with, crohns, even M.E. There is no treatment for those. I don't want to have fundoplication surgery for the reflux and hernia, because it sounds awful and scary. The gastroenterologist didn't even think the surgery was necessary when I last spoke to her. But I really cannot go on with it, I refuse, so without a diagnosis of celiac, what's left for me to do? Just fundoplication. I was prepared to replace my food, was planning it. I've been researching for months. I even managed to delude myself into believing I have celiac. When my dad got a letter a couple of weeks ago about his last blood test being "strongly suggestive of coeliac disease," I hoped even harder. I thought it was a sign! I feel so foolish. Now I'll have to wait to see the gastroenterologist again to talk about... What? Fundoplication? She didn't even want to do it. She just shrugged and smiled and said I was a difficult patient. I'm going to see my dad's doctor this week, if I can, to talk about how likely it is that I might have celiac after all, regardless of my results, because of my dad's positive blood test, and to discuss the possibility I might have M.E/Chronic fatigue syndrome. In all honesty, I was prepared to look into M.E, until my dad's letter. Then I was even more certain my problem was gluten. Now they tell me, I have no problem with gluten. I feel SO ill right now, I can only describe it as "malaise." My head is light yet heavy, with pressure. My eyes are begging to close. My gut has been painful for over a week. I can feel acid reflux as always. My nails are cracked and peeling, as always. There is blood in my stools. My muscles are painful and so weak that I couldn't stretch out my arm while holding a mug without my arm feeling weak and wobbly. My legs were wobbling as I walked on Saturday. My gums feel as if there could be an ulcer. And I have acne, pale/yellow skin tone, and a headache is threatening. I just can't go on. Really thinking about giving up. I will try to go gluten free anyway, but my mum doesn't believe gluten is my problem and has been sceptical the whole time, so she is reluctant to learn about cross contamination in the kitchen. She just says it's not the problem and it's something else. I don't want to have NCGS because I don't think my doctors/gastroenterologists believe it exists. Thank you for any help :(.
  5. Is it possible to have the celiac gene and be non-celiac gluten sensitive? Or if you are reacting to gluten and carry the gene, does that give an indication of celiac? My son's blood test came back negative, but the doctor wouldn't do an endo biopsy because she said he didn't have celiac. But if he carries the gene and had symptoms, wouldn't that be a red flag? Or could he carry the gene, have symptoms, and still just be NCGS?
  6. 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.
  7. Why did I call this post “Time for a Vitamin Reformation”? I see this a lot. So I wanted to write more about it. I share/write these posterboy blog post’s so that others might not have to suffer the same things’ I have. As always I hope you find it helpful to learn how/what someone else did to help their own selves in this journey/road we all walk/or have walked on as a Celiac Disease/NCGS patient. I know this post is way too long (again) as usual but I had a lot of ground to cover. So hang on if you can and will and if you have an interest in learning how I became the posterboy for Celiac and Pellagra. Learn from my mistakes! Quoting the Celiac and now Pellagra Posterboy “No man is so dumb as the man/woman who won’t learn from other people’s 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. Is it any wonder God’s promised’ land was described as a land flowing with milk and honey? Where knowledge (truth) flows there is health of mind and body. Truth of the right diagnosis can free us from the error of a wrong diagnosis. SADLY! Few listen. But some (Pellagrins’) who have received a Celiac diagnosis co-morbid have heard (listened to) the good news that Pellagra is reversible (when it is mimicking Celiac disease in a clinical setting) and have gotten better. Don’t be the Last! Tell others! So again Why did I call this post “Time for a Vitamin Reformation”? Most people (in the US anyway if you are reading this in some other country) are aware of the Protestant Reformation but most people are not as aware of the Catholic Reformation. Where basically the Catholic’s got smart? If you will and said all these Protestant’s are writing books (fresh off the invention of Gutenberg’s printing press (the internet of their day)) and the Catholic church said let us start printing our own books about how great the Catholic church is plus some minor changes essentially stopped the reformation in it’s tracks. And today there is still 1 Billion (with a Bee Catholics in this world. (I am not against either by the way) this is only by the way of illustration. I had recently wrote a blog post about this why Supplementation wins the War but I wanted to take another stab at it again. And even though I will have only used Vitamin(s) in this post. I want it to be clear this is for Vitamins and Minerals . . . like Iron, Magnesium, Calcium etc. It is just easier to type/write colloquially to use Vitamins to stand in for both Vitamins and Minerals together. See any of my comments or Ennis_Tx’s about Magnesium taken as Magnesium Citrate or Magnesium Glycinate. And why it is easy for the Protestant’s to claim a victory of sorts (there are Protestants still right) it is a pyrrhic victory at best because according to answers.com Catholics outnumber Protestant’s 2 to 1. https://answers.yahoo.com/question/index?qid=20070213184757AAHuhGz If you don’t still don’t believe me visit some of the old Cathedral’s of Europe you guessed it nearly all of them are Catholic Cathedral’s. Back to our point about Vitamins needing a Reformation. Such is the reign of Genetics today we blame it (our Genes) for everything today. Yet new research indicates maybe less than 1/3 of cancer’s day has anything to with Genetics at all. http://www.foxnews.com/health/2015/01/02/study-concludes-that-many-cancers-caused-by-bad-luck-in-cell-division.html Why this research is old it highlights my point that lifestyle (nutrition/vitamins etc) can and do help prevent Cancer today even in this GENETIC age we live in. http://www.cbsnews.com/news/lifestyle-changes-can-prevent-40-of-cancers-study/ To quote them from cbsnews “”We didn’t expect to find that eating fruit and vegetables (VItamin rich foods my words) would prove to be so important in protecting men against cancer,” Parkin said in the statement. … “This adds to the now overwhelmingly strong evidence that our cancer risk is affected by our lifestyles,” Dr Rachel Thompson, deputy head of science for the World Cancer Research Fund, told The Guardian. “ We hope this study helps to raise awareness of the fact that cancer (sickness) is not simply a question of fate (it’s in our genes my words) and that people can make changes today that can reduce their risk of developing cancer in the future.” My point is we need to be saying. Nutrition (Vitamins’ make us healthy) and not let Genetics get all the credit these day’s this includes our GI health too! I believe. It is actually probably more true too realize/say the balance is 50/50 because stress/environment effect both our health and yes even Genes. I think of it in these terms. A Vitamin is a substance we need in a “Min”ium” amount without which we become sick. I understand completely there is a lot of confusion about this topic. I will provide you some of the sources that lead/helped me come to my conclusions. Dr Prousky’s research is what I based my conclusion’s on and helped me to realize my Celiac Disease with/where he concluded “Niacin treats digestive problems” could also be confused for Low Stomach Acid. http://www.yourhealthbase.com/database/a124b.htm This is the link to the abstract. I realized this was going to be a future post when I saw Ennis_Tx muse about this question in a previous thread. Digestion is a north south process and it begins to make much more sense when you begin to understand the stomach protects your Small Intestine and if your defense are low (low stomach acid) when it is commonly thought to be high invading proteins like lactose, soy, and gluten etc. get through. http://divinehealthfromtheinsideout.com/2012/03/digestion-101/ Try a low carb (i.e. and also gluten free) diet for about a month and see if you flare ups don’t improve I think you will find your trigger is gluten and carbs. If so this will work but you will have to come to this conclusion on your own. It took me 3 years of study to understand these things God being my help. 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. If you are now taking an acid reducer/proton pump inhibitor (I can’t lie) there will be a transition period. They all have a wall effect (burning when stopped) that often lock people in to using them for years and years when they were only intended to be used for 6 weeks or less to let ulcer’s heal. Actually on the OTC kind people usually buy without a prescription. It is even less than that. Only 14 days is recommended. . . . not 14 months ++ as is so often the case for people when they begin an acid reducer. See the FDA box warning. https://www.fda.gov/drugs/drugsafety/ucm245011.htm It will take courage and conviction on your part to take a Vitamin when all you hear these days’ that the “average” person doesn’t need a Vitamin. (see link below about why all the hate for Celiac’ drug/medicine treatment?/ trials?) by Jefferson Adams which inspired my title. https://www.celiac.com/articles/24099/1/Why-All-the-Hate-for-Celiac-Disease-Drug-Treatments/Page1.html Or put another way why ‘all the hate” for Vitamins? these days” instead of “Time for a Vitamin Reformation” (though I believe it is. .. I am also convenienced) it will take another generation to realize Pellagra is now being diagnosed as Celiac disease today instead. It takes a generation to make a change unless there is Education. This posterboy blog post is about that education process/the things I have learned from studying this subject myself. Do not change any of your supplementation/medical regime unless you have consulted with a doctor. . . but I found it helped me. The ignorance of this fact that Pellagra can occur with/in/as part of a Celiac diagnosis is so strong that so much so the “average joe” won’t take a Vitamin for their health? Well an IBS/NGCS patient/ Celiac Patient is not the average patient. They are known to develop malabsorption syndromes and B Vitamins are known to help celiac patient’s why wouldn’t you at least try a B-Vitamin or B-Complex to see if could help your GI symptom’s. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html (though this study does not include the effects of full spectrum B-complex) it would have been nice if it did. I ask again “Who’s Afraid of a B Vitamin” See my earlier posterboy blog post about this topic Or to ask it rhetorically why all the hate for Vitamins these day (reader)? Or you (reader) afraid of a Vitamin? Or have you been too (reader) taught to hate Vitamins? And it isn’t just Niacinamide by the way (which is the focus of this post) it is most B-Vitamins. See this article about how B-1 Thiamine can help reverse Kidney Damage in Type 2 Diabetes http://news.bbc.co.uk/2/hi/health/7796073.stm Entitled “Thiamine ‘reverses Kidney Damage’ in Type 2 Diabetes” As usual this research is almost 10 years old and doctor’s clinical practices have not caught on to this fact proven by research. Instead the standard reply is “you don’t need Vitamins” or at least the average person does not. People who have TD2 or Celiac disease should not be considered the average person. Let me say at this point. Why is this not on the front page of every newspaper in the US and the UK and the world. Here we have a Vitamin that reversed Kidney Damage but no one is talking about it. What is not considered or well understood that these same vitamins that can help these patients – a deficiency in these same vitamins can also cause these same symptom’s. http://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/ Now back to Niacinamide for a few minutes. What if had a Vitamin that was known to treat GI problems? We do but clinical practice has not yet again caught up with the research. That is why Prousky’s research is so ground breaking and misunderstood because the same vitamin (commonly misunderstood) associated with these problems has been proven to help the same problems it (Vitamin B3) has been thought to cause … though not commonly (well) understood Niacin treats digestive problems. http://www.yourhealthbase.com/database/a124b.htm *****I must say at this point this is not medical advice only my experience with Niacinmaide See my previous posterboy blog post about how the average clinical delay is 17 years in implementing new research into doctor’s protocols’/treatment regimens. This clinical gap is a devastating delay. And also I want to make this disclaimer. The default (thought) here is you are not taking Niacin or any version of B-3 (in its many forms) or have either not taken it for Cholesterol management previously or are now taking it for your GI problems. If you are now taking Niacinamide/Niacin etc. this post does/is not directed at you (or other Vitamins/Minerals) for that matter . . . like Magnesium or Iron etc. Also see my posterblog post about how supplementing can help you fight a two front war. Any Vitamin or Mineral can be taken to excess . . . contributing to a worsening of your conditon.. . including Niacinamide, Iron, Calcium etc. This comment/thread is directed to those who have not yet considered supplementation previously. And with the intent you will only take this for a cycle of time. Say 4 to 6months for most people or 6 to 12 months max for the most severe forms of this disease. See this link where it explains how “up to 12 months” B-Vitamins helps improved/improves moods for those who are depressed. https://www.ncbi.nlm.nih.gov/pubmed/7477807 Reader, Do some of the research of I have listed here and if you still feel the same way. I get it. I have been on that same journey. But this is not as uncommon or unplausible as it might sound. The “House TV” show/medical drama noted this fact in their episode on Celiac Disease. Google House season 2 episode 22 on Celiac disease entilted “Forever” and you will find articles about it and probably a link to watch it. I think it would be enlightening to see how these two diseases are entangled like Siamese twins. When digestion works properly the God given burp is produced (not soda’s) but you burp like a healthy child at 6 months of age so too will an adult when they take Niacinamide (the nonflushing form of Vitamin B-3) for 6 months 2/day (especially if you are not taking PPIs currently). Your results might be different but you won’t know unless you try it. When I began my journey I was/became known as the posterboy for Celiac disease. What it has turned into unexpectedly is me being/becoming the posterboy for Pellagra too! It (Pellagra in Celiac’s) is not as rare as people think it is today especially 2ndary Pellagra caused by your original Celiac diagnosis since Vitamin absorption is frequently compromised in Celiac’s. I always have to 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 I have found (and my friends have found) if you take it (Niacinamide) like an antibiotic (UNTIL BURPING) then 95% of your GI stress will be in remission. And I don’t mean twenty minutes after you have eaten but 2+ hours later when burping has replaced burping and bloating that start’s almost as soon as you take you first bite. Or burping that occurs with drinking soda or a carbonated drink. Again I say 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” I hope this is helpful. Posterboy by the Grace of God, That is all for now until the next post. (Whenever that is) but the intent of this/theses post’s is “Too Educate” and anyone of my posterboy blog posts could help you without the need to read all my posterboy blog posts??? So I am sorry if I run a little long some times. . . but people need to know if this is the only blog post they read. . . Pellagra in Celiac’s can be successfully treated with supplementation or AKA a Vitamin Reformation (in the way we think) about GI problems according to Prousky who almost 17 years ago proved Niacinamide can help those with low stomach acid misdiagnosed. Will you listen? and take the Niacinamide Challenge taking it until you are burping 2 hours after you finish a meal. This usually takes 3 to 4 months taken it 3/day or morning and evening and (one hour before) bedtime (if it is not convenient to bring to work) works well for most people. This tends to be one 300 count bottle for most people. Though a smaller amount might work I want you to have a positive experience and thus recommend conservatively a 3 month to 4 month cycle – the amount your body can typically store in your liver – thus helping to reset your body’s stress clock (my words). This schedule works well for Magnesium as well. . . and usually it (Magnesium Citrate/Glycinate) causes restful dreaming in the first month of taking it. The power to change is in your hand for “To Educate is to Free” As always 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 medical regimen. But I have found (and friends have found) if you take it (Niacinamide) like an antibiotic (UNTIL BURPING) then 95% of your GI stress will be in remission. It is time for a Vitamin Reformation (a change in the way we think about Vitamins – a shift in our paradigm) praise bee to God! Back to when in the 20th century they understood Vitamins make us healthy! They even gave Nobel Prizes for discovering these substances called Vitamin(s) and rightly so! If this is the case for you – you the reader also have/had developed 2ndary Pellagra due to your primary diagnosis of Celiac disease. See my earlier posterboy blog post where I talked about my experience of developing Pellagra 2ndarly to my Celiac diagnosis. 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). Also see my posterboy blog post of how I supplemented Pellagra to death/into remission. Noted above (earlier) in this post but provided here again for easy reference. 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, 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. As always it is in this spirit of truth that I share so that others like my-self might not have to suffer the same things I did.
  8. Medical Mysteries and Shadowlands the Posterboys Story of how he unlocked help co-morbid Pellagra God being his help from his Celiac diagnosis. May you find the same faith in your life for to Educate is to truly Free! How to determine if it is a complementary or competing diagnosis? It takes faith to free yourself from a comorbidity. Health is like faith . . . you will only do what you believe. And you can have only faith in what you know to do. As some long time members of celiac.com know most/many of my blog posts’ document my trials and tribulations with Low Stomach Acid often being misdiagnosed as high stomach acid today). I have like many of you on this board had severe GI symptom’s culminating in a Celiac diagnosis after 30+ years of IBS and/or NCGS symptom’s. Only to find out that taking BetaineHCL (powdered stomach acid) helped alleviate many of my symptoms’. **** Let me say that this does not negate my positive Celiac/NCGS (really positive blood test only) diagnosis. I am in the medical world something termed a “Zebra” or “idiopathic” would be a more correct term/diagnosis. These GI conditions were happening for an “unknown reason” . . . Low stomach acid being misdiagnosed as HIGH stomach acid instead. Think the “House” TV show which I don’t get to see much anymore but commonly took several “differential diagnosis’s” to determine the correct one. While any of the previous diagnosis had a valid conclusion they ultimately were wrong. (But in TV land . . . . everybody finally gets the right diagnosis and gets better as if my magic it seems) but if you have ever read the Washington post’s “Medical Mysteries” column you know that is far, far from the real world sometimes. https://www.washingtonpost.com/national/health-science/a-bad-diagnosis/2015/08/24/b17606c2-12ac-11e5-89f3-61410da94eb1_story.html Often we/us “‘Zebras” exist in some “shadow land” as described well in this NYtime times article here discussing the difference between “The Damage of Bile Reflux not (Stomach) Acid” http://www.nytimes.com/2009/06/30/health/30brod.html quoting “The symptoms are similar to heartburn, and many sufferers are told they have gastroesophageal reflux disease, known as acid reflux. Yet treatment with popular remedies for acid reflux, like the acid-suppressing proton-pump inhibitors Prilosec, Prevacid and Nexium, fails to work or gives only partial relief. That’s because acid reflux is, at most, only part of the problem. The main culprit is bile reflux, a back-up of digestive fluid that is supposed to remain in the small intestine, where it aids the digestion of fats.” However if low stomach acid continues to be treated like HIGH stomach acid instead . . . no real progress is made and people become locked into a (bad) misdiagnosis. I have been that person. I know what it is like to receive one bad diagnosis after another. Co-morbidity is a real medical condition where more than one disease exists in a person and because of “preconceived notions” one disease is not being treated because the other “Primary” disease is considered secondary to the first. See my blog post about how this “devastating delay” can delay healing in recognizing the correct morbidity. Or can we identify the real/correct diagnosis in the first place. Maybe? Or Maybe Not? I am not saying this will help “All” your problems but it will help your co-morbidity. My co-morbidity was Pellagra occurring with/because of my Primary NCGS/Celiac diagnosis or as I said in another blog post I had Celiac disease and developed Pellagra. Or was it I had Pellagra and was diagnosed as a Celiac? How could I know for sure? I could supplement with the missing ingredient that leads to Pellagra in time. And if I got better then I had addressed a common co-morbidity in celiac disease. See my blog post where I explain how to win this two front war. I have found (digestive) peace praise be to God! Now I don’t’ expect this to work for everyone who try’s it but I didn’t anticipate the amount of resistance or faith it would take for people to consider a valid “differential diagnosis” either. It turns out without faith . . . people can’t get better. I will say it again “Health is like faith . . . you can only do what you believe”. What do I mean by that? Read most any post from Ennis_Tx and he will faithfully tell you about Magnesium. . . though few believe him (often) he faithfully tells it (because it helped him). I didn’t know what was happening at the time. I was witnessing the Pike Syndrome in action . . .until it happened to me. I naively believed . . . tell other’s and they will believe. Not so young padawan . . . you can have the knowledge to help other’s but until they know how much you care . . . they don’t care how much you know. I had come up against the greatest force in the (medical) world)) and maybe the world in general (I speak as a man) . . . inertia/apathy also called “learned helplessness”. Better known as the “Pike Syndrome” (Anybody who has received a misdiagnosis . . .. later on to find out your IBS is now NCGS or your NCGS is now Celiac disease this post is for you. Think if you had received a Celiac diagnosis in the beginning how much suffering you could of avoided over all these years.) Explained well here at a motivational coaches site https://jcrowcoaching.com/2012/02/01/that-pike-experiment-is-downright-chilling/ I will quote short pieces/clips to explain quickly what I mean but read it all for your selves for a more comprehensive understanding of this concept. “Known as the Pike Syndrome, it’s a great, albeit depressing, example of learned helplessness. There’s a pike in a tank of water along with a dozen doomed minnows. Sure enough, the pike darts and snaps and gorges. Poof, the minnows are nowhere to be found and the pike is pretty satisfied. Enter these two exceptionally perky researchers who proceed to lower a glass barrier into the tank and slip in another dozen minnows. Like any self-respecting pike, this fish is thinking “lunch,” and goes after them with gusto. Except he smacks his nose against the glass and comes up empty-handed (so to speak). Again. And again. Finally, the pike sinks to the bottom of the tank, suspends himself in the water and stops trying. That’s when these researchers (and really, they’re so happy they’re scary) remove the glass barrier, freeing the minnows to swim wherever they like. And where they like includes all around the motionless pike, right in front of his nose, even bumping into his head. And the pike? He just sits there and never again tries to eat a minnow. And he starves.” To many times in life there are “invisible barriers” in our lives’ holding us back. . . This is to those who have lost hope or are still searching (hopefully) if you are reading this blog post for yourself or a friend who has developed NCGS or Celiac disease. Gluten is your minnow (with good reason) but if you have Pellagra too (that invisible barrier) can be removed by supplementation. IF your now suffering from Celiac and Pellagra the way I was then taking Niacinamide will remove the Pellagra barrier in your GI quest to get better and find GI peace from Pellagra for yourself the way I have. How do we know if it really can be Pellagra instead? It is as simple as Occam’s Razor. From Wikipedia 1. “Occam's razor is a problem-solving principle attributed to William of Ockham (c. 1287–1347), who was an English Franciscan friar and scholastic philosopher and theologian. The principle can be interpreted as stating Among competing hypotheses, the one with the fewest assumptions should be selected.” The correct diagnosis is the simplest one to diagnose. Pellagra can be simply treated by supplementation. AND (a witness of two is true) IF you have developed a CORN allergy in addition to your gluten allergy you have met the medical definition of Pellagra 75+ years ago lost now to medical history. See Dr. Heaneys’ great blog post summarizing this fact about Pellagra and the 4 Ds. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ I will say it again “The correct diagnosis is the simplest to diagnosis”/simplest to treat in a co-morbid condition. . . where there is some doubt as to the true diagnosis. And supplementation removes that barrier if indeed you have also developed a corn allergy I beg you to consider taking Niacinamide 2 or 3/day (whichever is easier/ with each meal or morning and evening) for 6months to see if your GI problems don’t improve the way mine did after 30+ years of suffering from a Vitamin deficiency. Or if you are still suffering from a “poor prognosis” and poor dietary compliance (seemingly) though you have tried your best (you really have) and are still failing at achieving remission then consider the differential diagnosis of Pellagra is all I ask. Also see this thread about a Celiac starfish/zebra who is suffering still from Pellagra misdiagnosed as Celiac disease (I believe) and is shocked her Ttg levels are still elevated. quoting/paraphrasing from the earlier Pike Syndrome article christina this post is for you. “The thing is, unlike that starving pike, we have the power to change our perspectives, challenge the accuracy of our beliefs, and question our views. It’s not necessarily easy. Sometimes it takes an outsider to help . . . .who will push and prod and challenge. If we’re lucky something inside of us nudges at our unconscious until we move, and try, and change our views”… /belief(s) about our/your bad diagnosis. You will only know if you try! I pray you will have the faith to try! If it could help why wouldn’t you at least try? You are not a Pike! As always 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. 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 Change is not easy . . especially if you have developed/are suffering from the Pike Syndrome 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 (Pike/sufferer still suffering), by the comfort wherewith we ourselves are comforted of God.” Posterboy by the grace of God, *****Note: I have said all I have intended to say. I speak as a man. Badly misquoting Romans 10:14 How then shall they change their stars/diagnosis in what they have not believed/heard? and how shall they believe in what they have not heard? and how shall they hear without a preacher? Romans 10:14 "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?" I have spoken/preached to other’s still suffering with/about a diagnosis I did not receive that helped me. I hope it helps you too the way it did me. Pellagra – Like Celiac Disease has existed in the Shadowlands as a Medical Mystery for way too long! Find out which is the correct diagnosis is by supplementing with Niacinamide 3/day for 6 months I beg of you until BURPING two hours after a meal is your new normal and the “Natural Order of Things” have been restored. If this has "Piked" your interest you can read best how to take Niacinamide by reading this blog post. You are not a Pike! You can decide for yourself. Knowledge is power! Now that you know what else Celiac Disease could be what will you do with this knowledge? Will you sink to the bottom of the tank or try to bust through that glass barrier (which isn’t there) but in your mind if Pellagra is now being diagnosed as Celiac disease and the doctors have badly misdiagnosed this Medical Mystery (Pellagra) and you have been found to exist in the Shadowlands of Medicine. Then there is hope! This is not as far off as it might sound on a first hearing. See Season 2 Episode 22 “Forever” listed as episode 44 see link below of the medical TV drama “House” the “Differential Diagnosis” /Final Diagnosis was Pellagra for the Episode on Celiac Disease. https://en.wikipedia.org/wiki/House_(season_2) Feel free to comment and add your success stories when you begin burping w/o bloating for the first time in years and years so others too can be helped from your experience. Like I am sharing now. Praise bee to God if you have considered what I said and are willing to try it (taking Niacinamide) for yourself or your little pike if you are a parent and still searching for answer's for your little one until . . . burping is their/your new normal. I only know it helped me. I can't be the only one. If I am let it not be because I did not share! A witness of of two is true! Both you and your tyke take it (Niacinamide) at the same rate/amount 2/day or 3/day (whichever is easiest) and you will begin burping together -- a confirming sign that the Vitamin is making a difference and Pellagra is fading away into medical history for you in approx. 3 months. 2: 7 “Consider what I say; and the Lord give thee understanding in all things”
  9. Celiac.com 11/20/2017 - People who do not have celiac disease, but who have celiac-like symptoms that improve on a gluten-free diet are prime candidates for a condition called non-celiac gluten sensitivity (NCGS). Researchers don't know much about the condition. There are no biomarkers, so they can't just do a blood test. People with this condition often experience celiac-like symptoms. Many of people with non-celiac gluten sensitivity see their symptoms improve on a gluten-free diet. However, these people may also have puzzling sensitivities to other foods that just don't seem to add up. Interestingly, foods with gluten often contain fructans, a type of fermentable oligo-, di-, monosaccharides and polyols (FODMAPs). Fructan is one such compound. Could fructan be the culprit? A team of researchers recently set out to investigate the effect of gluten and fructans separately in individuals with self-reported gluten sensitivity. The research team includes Gry I. Skodje, Vikas K. Sarna, Ingunn H. Minelle, Kjersti L. Rolfsen, Jane G. Muir, Peter R. Gibson, Marit B. Veierød, Christine Henriksen, Knut E.A. Lundin. They are variously affiliated with the Division of Cancer Medicine, Oslo University Hospital, Rikshospitalet, 0424 Oslo, Norway; the K. G. Jebsen Celiac Disease Research Centre, University of Oslo, Norway; the Department of Nutrition, Institute of Basic Medical Sciences, University of Oslo, Norway; the Department of Gastroenterology, Monash University and Alfred Hospital, Melbourne, Victoria, Australia; the Department of Immunology and Transfusion Medicine, Oslo University Hospital, 0424 Oslo, Norway; and the Centre for Immune Regulation, University of Oslo, 0424 Oslo, Norway. For their double-blind crossover challenge, the team enrolled 59 individuals without celiac disease, but who followed a self-driven gluten-free diet. The team conducted the study at Oslo University Hospital in Norway from October 2014 through May 2016. The team randomly assigned study subjects to groups. For 7 days, each group ate muesli bars containing either 5.7 grams of gluten, 2.1 grams fructans, or a placebo. Subjects then underwent a washout period that lasted until the symptoms caused by the previous challenge were resolved. Washout period was a minimum of 7 days. After the washout period, participants crossed over into a different group, until they completed all 3 challenges. To measure symptoms, the team used the gastrointestinal symptom rating scale irritable bowel syndrome (GSRS-IBS) version. They used a linear mixed model for analysis. In this study of individuals with self-reported non-celiac gluten sensitivity, researchers found that fructans induced symptoms of irritable bowel syndrome, as measured by the gastrointestinal symptom rating scale. Clinicaltrials.gov no: NCT02464150 See the article below for more information, including study results. Source: Gastrojournal.org DOI: http://dx.doi.org/10.1053/j.gastro.2017.10.040
  10. Is 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,
  11. You find a magic typewriter in an old musty box in the attic. It will allow you to write a message to yourself on the day that you found out you had celiac (or gluten sensitivity etc). You can include anything you've learned about yourself, handling celiac, good strategies for coping, how to deal with emotional issues, hostile reactions from friends and family, travel, work, dating. etc. You may not include details of who won the World Series / next weeks lottery numbers etc as this would break the space time continuum and the typewriter will give you a nasty shock if you even try it, so just keep to the celiac insights.
  12. I thought I'd throw this question out to the community. If you had a magic wand and could eradicate one commonly held misconception about either celiac, ncgs, or both, what would it be?
  13. I recently read a on a Celiac research site, that when a non Celiac gluten sensitive person is blood tested for evidence of an autoimmune disease, they will never test positive for that disease and therefore continue to go without a correct diagonises. I am looking for a copy of that research document because I have to change my rheumatologist because he retired and I have met others who continue to live without the correct diagnoses all because we are gluten sensitive! He headed the Rhumatology department of a large teaching hospital and knew just by looking at me that I have Scleroderma and Raynaud's. I went on to be seen for Sjogren's by a cornea specialist and there was a great debate as to whether I qualified because of my ANA test. (I have the most severe dry eye with cornea damage, dry mouth and dry vagina and the DNA that indicates I could be a candidate for Sjogren's.). This would be an important find for the community of us that continue on our search for health. I am 100% gluten free for 5 years; research gluten and its impact on our life; coach people that have gluten issues on how to build their life without gluten and embrace a new way to live; my 21 year old grandson is gluten sensitive and has several autoimmune diseases and my sisters and cousins have both also.
  14. Celiac.com 05/15/2017 - For all the talk of studies touting evidence for non-celiac gluten sensitivity, the actual data don't stack up very well, according to an recent assessment by two researchers, whose results appear in Clinical Gastroenterology and Hepatology. In an effort to determine the accuracy of using a double-blind, placebo-controlled study to confirm diagnosis of non-celiac gluten sensitivity in patients who respond to a gluten-free diet, researchers Javier Molina-Infante, and Antonio Carroccio recently set out to assess data on a series of such studies. Both researchers are affiliated with the Department of Gastroenterology, Hospital Universitario San Pedro de Alcantara in Caceres, Spain. For their study, the pair analyzed data from 10 separate double-blind, placebo-controlled, gluten-challenge trials on a total of 1312 adults. The available studies varied significantly in many ways. The duration of the gluten challenge, for example, varied from 1 day to 6 weeks. The daily doses for those gluten challenges varied from 2 grams to 52 grams, with 3 studies administering 8 grams or less each day. The composition of the gluten-free placebo also varied considerably between tests; including variation by gluten-free product type, and levels of xylose, whey protein, rice, or corn starch containing fermentable carbohydrates. Most of the studies did find gluten challenge to significantly increase symptom scores compared with placebo. However, out of 231 NCGS patients, only 38 patients (16%) showed gluten-specific symptoms. Moreover, nearly half (40%) of these patients showed similar or increased symptoms in response to placebo; something researchers term a 'nocebo' effect. That leaves just 6 or 7 patients out of 231 showing gluten-specific symptoms. The researchers also point to heterogeneity and to potential methodology flaws in gluten challenge studies. They also present powerful questions about gluten as the trigger for symptoms in most patients with presumptive NCGS. Lastly, they highlight the importance of the nocebo effect in these types of studies. These results certainly invite more careful, rigorous studies on the matter, and challenge researchers to provide solid data from well-crafted double-blind placebo controlled studies. Basically, what little evidence we thought we had to support the existence of non-celiac gluten sensitivity has been shown to be thin at best. Until solid evidence arrives, the status of non-celiac gluten sensitivity will remain open to question and doubt by both researchers and potential sufferers. Source: Clin Gastroenterol Hepatol. 2017;15(3):339-348.
  15. I wanted to collect some of the info on NCGI in one place so that visitors who test negative but may still have an issue with gluten can be directed there. I'll add to this post as I find new links, but feel free to add or contribute anything you think may be of use! Matt --- Useful links: An overview from Alessio Fasano, one of the world's leading researchers on celiac and gluten sensitivity: https://www.youtube.com/watch?v=VvfTV57iPUY Umberto Volta, another leading researcher in the field gives some of the latest findings about NCGI: Presentation slides from Dr Volta's visit to Coeliac UK - NCGS about halfway through A scholarly overview from celiac disease magazine: https://www.researchgate.net/profile/Knut_Lundin/publication/232528784_Non-celiac_Gluten_Sensitivity/links/09e415098bbe37c05b000000.pdf A good overview from a sceptical but fair perspective: https://sciencebasedmedicine.org/a-balanced-look-at-gluten-sensitivity/ Another overview: https://celiac.org/celiac-disease/understanding-celiac-disease-2/non-celiac-gluten-sensitivity-2/ University of Chicago's excellent celiac site's take: http://www.cureceliacdisease.org/category/faq-non-celiac-gluten-sensitivity/ A compelling account in the British Medical Journal from an NCGI patient: http://www.bmj.com/content/345/bmj.e7982 Here's some positive news about a potential new test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 NCGI in children: NCGI and auto immune study: https://www.ncbi.nlm.nih.gov/pubmed/26026392 Also consider: Fodmaps: http://www.kcl.ac.uk/lsm/research/divisions/dns/projects/fodmaps/faq.aspx This Monash study: http://fodmapmonash.blogspot.co.uk/2015/03/the-truth-behind-non-celiac-gluten.html suggested some who think they're reacting to gluten should actually be reducing fodmaps Sibo: http://www.webmd.boots.com/digestive-disorders/small-intestinal-bacteria-sibo
  16. A close family member has hashimotos but her doctors have never mentioned gluten to her as a potential trigger. They also have her on a long term course of PPI which I'm very sceptical about. As some of you can imagine I tend to see gluten behind everything and as I had thyroid related symptoms when I was on gluten which have resolved on the diet and know from this forum that there's a lot of evidence that there's a connection: https://www.celiac.com/gluten-free/search/?&q=hashimotos I want her to request celiac testing and then, if negative (as mine was incidentally), trial the gluten-free diet. Are there any good sources online which I could point her too concerning the link between the two conditions? I found this: https://thyroidpharmacist.com/articles/top-7-hashimotos-food-myths/ but I wondered if there's a good site that anyone would recommend? Many thanks for any advice you can offer or experiences you can relate Matt
  17. Is it NCGS or Low stomach acid misdiagnosed Low Stomach Acid and Celiac Disease Dear Gluten Intolerant please consider Low Stomach Acid as a possible Differential Diagnosis as a possible way to achieve remission of your GI symptom's. “Consider what I say; and the Lord give thee understanding in all things” 2 Timothy 2: 7 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. See this research as reported on celiac.com that discusses the increased risk of/for someone to develop celiac disease after taking PPI’s. http://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html Note how the article starts quoting “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 he is postulating. He goes 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. 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”. If even after a year OFF these medicines your chances of developing Celiac Disease (celiac disease) not to mention even NCGS which is much more prominent surely the researcher is correct in postulating that there is a cause and effect relationship between low stomach acid and NCGS and/or Celiac disease. Surely there is something we can learn here. I now postulate some homework for the reader of this blog post. Do some research for yourself and see if achlorhydia or hypochlorhydia symptoms don’t at least resemble in some manner all of the GI symptoms you have been having. (I note some of the many symptom’s low stomach acid can present with below as referenced from Dr. Myatt’s online article “What’s Burning You” for easy reference (It might not be what you think (my words)) It is important to note here that “some” symptoms does not mean all but many or several. It is called a differential diagnosis. It is an important diagnostic tool in medicine. Think of the tv show “House” where they spend the whole hour/over a week times going through the ‘differential diagnosis’ in short any one symptom can/have many different causes. The trick is how to quickly eliminate possible outcomes as symptoms (many) go up. All is usually never meet because that would make the disease in full outbreak and obvious even to the layman a condition described as “frank” or “classic” Scurvy or Rickets as an example. 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 or maybe NCGS 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). So in summary if 3 or 4 or 5 or 6 of these symptoms overlap “many of’ these symptoms could be Low Stomach Acid related. IF that is the cause/case for you then there is hope! For remission! From Dr. Myatts’ Online article what’s burning you? From Dr. Myatts’ Online article what’s burning you? http://healthbeatnews.com/whats-burning-you/ Diseases Associated with Low Gastric Function Low stomach acid is associated with the following conditions: * Acne rosacea * Addison’s disease * Allergic reactions * Candidiasis (chronic) * Cardiac arrhythmias * Celiac disease * Childhood asthma * Chronic autoimmune hepatitis * Chronic cough * Dermatitis herpeteformis * Diabetes (type I) * Eczema * Gallbladder disease * GERD * Graves disease (hyperthyroid) * Iron deficiency anemia * Laryngitis (chronic) * Lupus erythromatosis * Macular degeneration * Multiple sclerosis * Muscle Cramps * Myasthenia gravis * Mycobacterium avium complex (MAC) * Osteoporosis * Pernicious anemia * Polymyalgia rheumatica * Reynaud’s syndrome * Rheumatoid arthritis * Scleroderma * Sjogren’s syndrome * Stomach cancer * Ulcerative colitis * Vitiligo When low in stomach acid we become low in essential nutrients Quoting from Dr. Myatts “what’s burning you” online article “Our bodies need 60 or so essential nutrients. “Essential” means that the body MUST have this nutrient or death will eventually ensue, and the nutrient must be obtained from diet because the body cannot manufacture it. Many of these essential nutrients require stomach acid for their assimilation. When stomach acid production declines, nutrient deficiencies begin. Calcium, for example, requires vigorous stomach acid in order to be assimilated. Interestingly, the rate of hip replacement surgery is much higher in people who routinely use antacids and acid-blocking drugs. We know that people who have “acid stomach” were already having trouble assimilating calcium from food and nutritional supplements due to lack of normal stomach acid production. When these symptoms are “band-aided” with drugs which decrease stomach acid even more, calcium assimilation can come to a near-halt. The result? Weak bones, hip fractures and joint complaints resulting in major surgery. Jonathan Wright, M.D., well-known and respected holistic physician, states that “Although research in this area is entirely inadequate, its been my linical observation that calcium, magnesium, iron, zinc, copper, chromium, selenium, manganese, vanadium, molybdenum, cobalt, and many other micro-trace elements are not nearly as well-absorbed in those with poor stomach acid as they are in those whose acid levels are normal. When we test plasma amino acid levels for those with poor stomach function, we frequently find lower than usual levels of one or more of the eight essential amino acids: isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine. Often there are functional insufficiencies of folic acid and/or vitamin B12.” Remember, these are essential nutrients. Deficiencies of any single one of them can cause serious health problems over time. Weak bones, diminish immune function, failing memory, loss of eyesight and many other “diseases of aging” are often the result of decreased stomach function.” It is me again reader. So low stomach acid is the triggering agent (often) for low nutrients. Make too much sense! Now don’t take Vitamin’s for this condition where low Vitamins/Minerals are known to be low in patients who have this condition because . . . . (if you do you won’t need to keep coming back to the doctor) I can almost hear the doctor say now. Of course he/she doesn’t say that . . . just that the “average person” doesn’t need to take Vitamins. Well I hate to break it too you . . . . but if you are having GI problems and reading this blog post on celac.com then you are not the “average” person. You my friend or a sufferer or a friend of a sufferer still looking for answers. If that is you then consider taking either powdered stomach acid – Betaine HCL or taking Niacinamide to help you reset your stress clock. A Canadian researcher wrote about this connection 15+ years ago but still most doctors’ don’t understand this connection between about how “Niacin treats digestive Problems” Here is the full link so you can research it more yourself. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml And you might not after a first reading. I didn’t believe it myself for over a year . . . but every time I thought about it – it (Low Stomach Acid) made/makes the most sense to me. **** Note: research this yourself. Here is a link about how to take Betaine HCL (powdered stomach) for maximum effectiveness. http://20somethingallergies.com/how-much-hcl-do-i-take-learn-to-test-for-your-correct-dose/ Don’t take my blog post as medical advice. It is only what I did . . . it might not work for you but I think it is worth a try especially if you are not now taking an acid reducer. (see notes below about why this might) be more difficult if you are already taking an acid reducer . . . because the rebound wall (see chris kresser link) keeps us locked in . . . sometimes for years. Since I was not taking acid reducers at the time I took Betaine HCL my stomach problems improved and I am sharing this now in the hopes it might help yours too! Now back to (really) LOW stomach acid being diagnosed as HIGH stomach acid these days. How can we know if it truly high or low? You’ve heard the phrase timing is everything well it is here too! Timeline is important in any diagnosis. IF your stomach acid was HIGH as you often hear (everywhere) you hear take a Proton Pump Inhibitor aka acid reducer’s for heartburn/GERD (medical name for heartburn) then eating food (carbs, greasy things) wouldn’t bother you. The acid would cut it up but if it is already low/weak then even a little acid can burn your esophagus which is not coated like the stomach to protect you from high acid. BUT if it is low to start with then food will WEAKEN our/your acid so that you lose the food fight your in and things (carbs/fats) become to ferment, rancidify and cause heart burn. Leading in time to Non-Celiac disease first and with enough injury (and time) to Marsh lesions qualifying you for diagnosis as a Celiac candidate / patient. See above link between/about PPI’s in the year preceding a Celiac diagnosis. If you (can) be that patient and weight the xx number of years for all this damage to occur, there is a better way it is called digestion! A virtuous cycle can replace the vicious cycle you are now in – it is caused digestion. Digest your food with healthy stomach acid and your body will thank you for it with the God given burp. A healthy child burps (at 6 months of age normally) and a healthy adult should too and you will again after taken Niacinamide 3/day for 6 months or this is not the right diagnosis. *********Note this is not medical advice only my experience with Niacinamide and my many years researching this topic as a fellow sufferer. Let me make these disclaimer(s). If you are a) experiencing heartburn that causing vomiting (with unintended weight loss) you may have a special case of heartburn that feels like heartburn (on steroids) that is really Bile Reflux and taking Stomach is not something you should do without medical advice and supervision. See this NYtimes article that discusses the many complications often seen with Bile Reflux patients and why it is treated as Heartburn often and why Bile Reflux is especially hard to recover from. http://www.nytimes.com/2009/06/30/health/30brod.html you are already taking an acid reducer then the chance you will get better (off of acid reducers completely) is only 50/50 on your first try but going low CARB can help your transition. Otherwise most people will get better when taking BetaineHCL for gastric support and Niacinamide to help them/you reset your digestive processes. See this online article about how Jo Lynne Shane got off Nexium for good. http://www.jolynneshane.com/how-i-got-off-nexium-for-good.html and her Epilogue http://www.jolynneshane.com/epilogue.html You will see she still struggles some but is much better when she let her natural digestive juices do their job. I call it the “Natural Order of Things”. See this article about the digestion process being a North South Affair from the bodywisdom website http://bodywisdomnutrition.com/digestion-a-north-to-south-process/ Taking it (Niacinamide) (or any B-Vitamin) should be taken 2 to 3/day (too keep up serum levels) for 3 to 4 months (the time you can store B-Vitamins) in the liver mostly. Once you have a distinctive BURP that displaces the bloating and sense of “I am going to explode” if I eat another bite (though you haven’t eaten half your meal) then normal digestion is occurring again. If you stool did not sink before this process (of taking Niacinamide begun) and burping became your “new normal” then it (your stool) will begin to sink too! Burping without bloating is the “Natural Order” of good digestion. Don’t stop this process of taking B-Vitamins as Niacimaide or Slo-Niacin 2/day for at least 4 months then you should see most of your GI symptom’s go into remission. (I did not say "cure" but remission from your cross contamination's (flares/symptom's etc.) might be possible. Because our defenses are now strong enough to cut up proteins before they reach our small intestine (where most of the damage is done). Think of a castle with a moat around it (stomach acid is designed to protect us) when it is low (the moat doesn’t protect us) and when the moat is dry the castle becomes a ruin!!! So do proteins (lactose (casein), gluten, soy, seafood etc.) to our small intestines (they become ruined) when our stomach acid (moat) is low or worse dry! I repeat again Timeline is important in any diagnosis. All heartburn is not equal. IF your stomach acid is truly high then it WILL occur between meals when there is no food to tamp down the fire (occurring in your stomach) not your esophagus. The excess pressure from fermented carbs push open the trap door allowing the low acid you have to burn the lining of your uncoated esophagus. See also this online article by Chris Kresser to study this more about why/how this could be a case of medical misdiagnosis in more detail https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ This is part of a 3 part series that I think you will find very informative. This (low stomach acid) is a vicious cycle. STRONG stomach acid makes it a virtuous circle/cycle. Now food benefits you because low acid not only causes heartburn it limits your body’s absorptive ability by limiting its ability to cut up your food into digestible peptides and amino acids which are no longer harmful to your Small Intestine but helpful to your overall health because nutrients can now be absorbed because the food particles are now small enough to not cause harm to your villi. I hope this is helpful and it helps you the way it helped me. Maybe it will help you in a similar manner. I write this only as a guidepost on your way. May you find your way back to digestive peace! The “Natural Order” of things! Praise bee to God! It is not a long way if you know the way . . . . from someone who has found his way back God being his help! There are more things I could say . . . but this post is getting kind of long but you get the gest. I noticed someone else on the celiac.com noticed the same improvement when they treated their low stomach acid and thought it was time a blog post talked about it. It is so much easier to consume all this information in one setting instead of hunting and peeking through several thread posts. Search for the posterboy on celiac.com and you will find it is my focus (how low stomach acid is misdiagnosed) and how Niacinamide helped me to restore its “Natural Order” in the digestive process because it helped me! Here is the link to the Prousky’s abstract. 15+ years is a long time for people to continue to suffer but if the research it right then Niacinamide might help you too! http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm Let’s hope it is not another 15 years before doctor’s and people realize low stomach acid can explain many of the same symptom’s an IBS, NCGS or even a Celiac patient might experience given a long enough time for these conditions to develop from too low a stomach acid to protect our Small Intestine. See link at start of this blog post posted here again for convenience. http://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html And it is worth noting about the time Celiac disease started (began to be more prevalent) / to increase in the population Acid reducer’s became more and more popular. *** Some plot the increase in time to Roundup usage but I am not buying it. PPI’s increase seam more plausible to me based on the relatively new research (less than 5 years old) is pretty current by research standards and the near linear response to increased first H2 stomach acid reducer’s then PPI’s in the population at large. *****Note: after I finished writing this blog post new research that in my mind confirms this connection was reported on celiac.com today that notes the link between gastric pH and impaired nutrient absorption. This very topic as I was getting ready to publish my post about low stomach acid possibly being diagnosed as Celiac disease on my posterboy blog mentions how a Celiac patient’s absorption can be impaired by gastric pH. https://www.celiac.com/articles/24738/1/Can-Celiac-Disease-Impair-Drug-Therapy-in-Patients/Page1.html Where they (researchers) say/ask discussing Celiac Disease and whether it (celiac disease) can impair drug therapy in patients. Note the opening paragraph discussing this topic quoting “Celiac disease is associated with numerous chronic conditions, such as anemia and malabsorption of some critical vitamins. Changes in the gastrointestinal tract, rates of gastric emptying, and gastric pH are responsible for impaired vitamin and mineral absorption." i.e., low gastric pH can effect absorption. It stands to make reasonable sense to me they are related conditions and one is being diagnosed for the other often or at least one is being confused as the other and treating one (raising your stomach pH) might treat the other since many of the symptoms’ are the same. *** this/these opinion(s) are my own and do not reflect an endorsement by celiac.com of these ideas, comments, thoughts or opinions. I hope this helps! You the way it did me! Good luck on your continued journey, 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. Posterboy by the Grace of God,
  18. Why and How Pellagra is (often) Confused with Celiac Disease and/or Digestive Problems ; The Science of Pellagra a Hidden Epidemic in the 21st Century presenting/revealing as Celiac Disease. When I was gluten intolerant following a Gluten Free diet religiously and newly diagnosed as a Celiac I began studying to see if there was a “cure” for this disease. About 3 years into my study of Celiac disease I begin to match up/cross reference symptoms of Low Stomach acid – Hypochlorhydria. It seemed obvious my symptoms were the same. See the link by Dr. Dana Myatt “What’s Burning You” that explains why this is so. https://www.drmyattswellnessclub.com/WhatsBurningYou.htm It was on that day the seed was planted that if I could begin to digest my food again then gluten would be cut up into harmless peptides. It would take another year before I had the courage of my conviction to actually try gluten again knowing the five alarm bathroom visit I would set off if I was wrong … but the research was clear the doctor’s had the wrong disease. I had become/was low in Stomach Acid. This post/thread on Celiac.com talks about the effects of leaky gut when your stomach acid is not strong enough to digest proteins – it is known as hydrolysis – to cleave by water and it explains why a healthy baby burps at 6 months of age and a healthy adult should too. https://www.celiac.com/gluten-free/topic/117026-leaky-gut-intestinal-barrier-impairment-help/#comment-969684 (I didn’t know this at the time) but Celiac.com reported on this finding that Proton Pump Inhibitors can contribute to a Celiac Diagnosis. See this link https://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html Where the researchers concluded “Patients prescribed both proton pump inhibitors and histamine-2 receptor antagonists had an even higher risk for celiac disease .. . 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. 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.” So this confirmed my hunch and over 3+ years of research. So with faith in myself and God that He had led me to this wisdom (2 Timothy 2:7) I began my journey back to peace with Gluten and health I had not known in over three decades. And after a year of being able to put my cross contamination issues in remission (no accident poisoning’s when dining out) – defeating my mortal enemy gluten I began to write about my opus /journey back to peace with gluten. “I Know World Peace is Easier”. Someone who I was explaining this too (or trying to explain this to) asked me but “why does this happen” and I didn’t have an answer for them. So that set me off again. If I could figure out by God’s Grace why this was happening then imagine all the suffering that could be avoided by people? Well after much study and the Grace of God – I did. STRESS! What happens when we are stressed – we burn energy and a lot of it? Fight or Flight right? All this fighting takes energy and lots of it to survive the body takes our energy reserves from other parts’ of the body when it does this too much or too often over a 3 to 4 month period our body becomes STRESSED out. This is the same amount of time our body can store B Vitamins usually in the Liver. Is there anything we can do to help with this STRESS we are experiencing or is it hopeless. No it/we are not helpless or hopeless if we will supplement (or feed our cravings) of the missing ingredient/nutrient then we can meet our need and remission from too much stress is obtained. Hence the Niacinamide Challenge I have mentioned elsewhere in this blog. Prousky talks about this in his seminal work “Is Vitamin B3 Dependency a Causal Factor in the Development of Hypochlorhydria and Achlorydia” linked here http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml where he theorizes (note this is research 15+years old) and still we don’t know/understand this connection or it is not widely talked about enough that Niacinamide supplementation can help digestive problems and that quoting prousky “The primary somatic complaints of individuals with vitamin B3 dependency are be gastrointestinal disturbances with hypochlorhydria presenting as one of the early clinical signs of the vitamin dependency. The only way to confirm a clinical suspicion of a vitamin B3 dependency is to provide optimal doses of the vitamin, and see if the clinical problems improve or resolve.” Or be tested for Pellagra. Which the Doctor’ are not looking for today. Like the doctor’s did not look for Celiac disease 15 or 20 years ago neither is Pellagra looked for today because they don’t know to look for it anymore. See this blog post by Dr. Heaney of Creighton University that talks about why this is so today. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ where he (Dr. Heaney) says correctly that “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.” And that is unfortunate for GI patients of all stripes and kinds (IBS, Heartburn aka GERD, Non-Celiac Gluten Sensitivity etc.) because doctor’s today don’t know to look for Pellagra anymore as a GI disease. How do we know this? We can’t for sure unless we are willing to take the missing nutrient according to Prousky “a vitamin B3 deficiency occurs when the intake of the vitamin is below a known minimal amount that guards against pellagra. A vitamin B3 dependency occurs when there is an increased metabolic need for the vitamin requiring treatment with megadose amounts”. Or have our doctor’s test us for a Niacin deficiency. A deficiency is why we enrich/fortify are bread with Niacin our milk with Vitamin D and our salt with Iodine. A dependency is when are bodies don’t function properly due to high stress levels requiring high or increased metabolic need as quoted by Prousky above. 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. As cited in the International Journal of Celia Disease http://pubs.sciepub.com/ijcd/3/1/5/ from the article “Two Exceptional Complications Revealing Celiac Pellagra and Ischemic Cardiomyopathy … “pellagra is essentially affecting tissues with a high rate of cell turnover, such as the digestive tract and the skin, and tissues with high energy needs, such as the brain”. 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. How do we know this? The same Journal of Celiac in another 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.” 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. 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. 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!” I ask if you have the wrong disease would you get better Or Is Non-Celiac Gluten Sensitivity and/or Celiac Disease really Pellagra in disguise in the 21st Century? Suffering by another name hurts just as much???? Does it not? Pellagra being confused for Celiac disease in the Majority of those being diagnosed as Celiacs’ today -- hurt’s as much Does it not . .. and probably worse because then/now you have ruled out a valid differential diagnosis. Why is this? Or how is this possible? The International Journal of Celiac Disease muses on this point too? when discussing the “exceptional” (not well understood) reason why Pellagra shows up in a Celiac Diagnosis. They say “Little progress has been made in our knowledge of pellagra … since Goldberger discovered that nicotinamide was a preventive factor in 1926” of Pellagra. Continuing the citation “Proof of this is that there have been no changes’ in treatment or diagnostic criteria in the last 90 years” for Pellagra. As the International Journal of Celiac Disease summarizes this case of “Exceptional Complications Revealing Celiac Disease and Pellagra “illustrates … rare (I would say common) complication revealing celiac disease”. Because it is not YET well understood that 58 percent of Celiac patients are Co-Morbid with Pellagra. Common enough I believe to declare Pellagra as the Parent disease and the subsequent Celiac patient the child meaning every one (95 plus percent probably) of those diagnosed with Celiac disease has symptoms derived from Pellagra though it is not now commonly understood in the medical community. If we follow most normal paths’ for adoption it will take another 15 or 20 years (a generation) for the medical community to accept Pellagra as the proper diagnosis. Don’t suffer in the meantime! If the International Journal of Celiac Disease is right and Pellagra is Co-Morbid revealing as Celiac disease the majority of the time? Then take the “Niacinamide Challenge” for yourself and see if you don’t begin burping in 6 months or less depending on how many times a day you take it and potentially put your IBS/GERD/NCGS and possibly ??? dare I say it Celiac in remission along with your Co-Morbid Pellagra symptoms aka (the 3 D’s) 75+ years ago if one is being diagnosed as the other. It will take one more test to make a valid determination or else we can’t know for sure which disease we really have since they are eerily similar in their clinical presentations. The Mdguidelines website outlines why this is so see their link http://www.mdguidelines.com/pellagra Where they (Mdguidlines) say quoting “The diagnosis of pellagra is straightforward when the classic rash is present but may be (more/my word) elusive if there are only gastrointestinal and/or neurological manifestations.” The LTO website gives an good overview of the B-Complex test than be performed to confirm if Pellagra is presenting as Celiac disease. See this link https://labtestsonline.org/understanding/analytes/b-vitamins/tab/test As I have said before in this blog. A healthy child burps at 6 months of age and you can too in six months by taking the Niacinamide putting your Co-Morbid Pellagra (digestive) symptom’s into remission if indeed we can believe the International Journal of Celiac Disease and your Celiac Disease is presenting as Pellagra the majority of the time. See this article feature on Celiac.com that explains in more details why this is so. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html Keep in mind the more times a day you take it (Niacinamide) the quicker the desired effect. You will begin burping and your stool will sink if does not already. See my other blog post where I say I was a Pellagra patient diagnosed as a Celiac patient to learn more about how to take Niacinamide properly and what signs too look for when it is working and the natural order of things has been restored and you are now digesting your food again. 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. This will not work if are already taking a PPI (proton pump inhibitor) like Prilosec, Nexium or one of their generics or other acid reducers for hearburn/GERD but if you are only taking antacid’s like Rolaids or Tums then burping will occur where it is most likely not occurring now. You will need to take stomach acid to get you over rebound wall that comes on when you stop taking your acid reducers. See prousky link about how to do this or check with Dr. Google where there are websites that explain how to do this. But new research by Washington University strongly suggest that you need to work with your doctor to get off you PPI’s and do it as quickly as possible where they say the “ Popular heartburn drugs (PPIs are) linked to gradual yet 'silent' kidney damage Most patients don't experience acute kidney problems beforehand” https://www.sciencedaily.com/releases/2017/02/170222082252.htm This is only the latest bad news for Proton Pump Inhibitors. So if you are taking them for gastric support they may be doing more harm than good in the long run. But I prefer to talk about Vitamins because they are safer to take and are at the root cause for most diseases and yes Pellagra being diagnosed as Celiac’s today. What have you got to loose there is better than a 50/50 chance your doctor will find Pellagra is the correct disease or at least you will eliminate the contributing concomitant Pellagra symptom’s greatly controlling your Pellagra flare up’s (the 3 D’s – dementia(s), digestive issue(s) dermatitis issue(s)) being confused/revealing as your Celiac disease by mistake. If you have never heard of Pellagra you are not alone. Many doctors have not either and that is why they don’t find it. You only find what you are looking for! Perhaps with this education/awareness you now have the doctor’s/patients will be more aware now that the presenting symptoms of Celiac disease and Pellagra are eerily familiar and one disease is being confused for the other. Or at least they were in my case. As I am fond of saying “To Educate is to Truly Free”. YOU don’t have to have all 3 D’s to have Pellagra any one of the D’s like C and D is enough to confirm Pellagra in the absence of Dermatitis issues etc. See md guideline quote above. Quoted again here for easy reference Where they (Mdguidlines) say quoting “The diagnosis of pellagra is straightforward when the classic rash is present but may be (more/my word) elusive if there are only gastrointestinal and/or neurological manifestations.” I couldn’t agree more. Your path to the knowledge of a Celiac diagnosis as we know is a long one for most people. It doesn’t have to be a long path back if you know the way. Knowledge of Pellagra is fairly poor (elusive) today the way Celiac disease was 15 or 20 years but the path to a valid/correct diagnosis of Pellagra doesn’t have to be a long one if you will have your doctor test you for It (Pellagra) to see if your Pellagra is like the 58% of Celiac’s according to the Journal of Celiac Disease is masking/presenting as Celiac disease today. Let’s take the mask of Celiac disease off and reveal the true diagnosis if you will and get tested for a Niacin deficiency proving that Pellagra is contributing to your poor patient experience i.e. super sensitivity etc. The gluten free works website covers this topic well. A niacin deficiency in Celiac’s. https://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/ Where they quote old research (again this is not new information) but the awareness is low that a “niacin deficiency itself sensitizes the intestinal mucosa of rats to gluten in wheat, barley, rye, oats and corn and induces susceptibility to gluten toxicity by means of cellular dysfunction.3” This research is 30+ years old. How much longer will we suffer in ignorance of this fact? They say and I couldn’t agree more! “Human research needs to investigate this effect of niacin deficiency in human celiac disease” or at least it is high time that Celiac’s are also tested to see if co-morbid Pellagra is contributing to their Celiac Diagnosis. And Prousky did 15+ years ago (did human research on Niacin and digestive issues) but people still suffer today because it still not well known (understood) today that Pellagra a Niacin deficiency treats digestive problems. This blog post is about awareness of this fact that medical doctor’s today are not looking for Pellagra in Celiac’s and therefore people continue to suffer because of it. Good luck to those who are still on our journey who come across this blog post and find it helpful. I hope it helps you on your journey to find at least one was able to find (their way back)/help himself /herself/themselves of their GI problems by taking a Vitamin for a rarely diagnosed disease today -- Pellagra but is eerily similar to the way Celiac disease presents/is diagnosed today. If you still have questions after reading this blog post about my journey of how I learned Pellagra is being diagnosed as Celiac Disease today then visit the website in my profile to read more about why doctors are ignorant of this fact today but there is only so much you can put in one blog post. But I hope this is enough to pique your curiosity. Or search for the posterboy on celiac.com to read all my posts or comment threads about why Pellagra is being diagnosed as Celiac Disease today. Knitty Kitty also comments a lot about how Niacin helped her DH symptoms. It is my hope it will help you too to know that there is an alternative diagnosis. It is said ignorance is bliss. Well in this case it is dangerous. If you had cancer wouldn’t you want to know . . . of course you would! If you have Pellagra the ignorance of this fact can kill as surely as Cancer. The 4th D of Pellagra is death. So please have yourself tested to see if Pellagra is contributing to your Celiac disease symptom’s is my advice to you and maybe just maybe you too like me will have a good/favorable response and your cross contamination issues will go into remission. Praise bee to God! To those who will hear and listen! I am just trying to help those who are still suffering. I am that boy walking along the shore throwing starfish back or trying too! 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. 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), 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,
  19. 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 [38]. 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 [38].” 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.
  20. I thought this part of the study was interesting. It brings to light how some people can go gluten-free except for their beer and they still feel better. I'd like to read more studies on Celiac vs NCGS. "Whereas celiac disease subjects should maintain a lifelong, strict GFD and limit their exposure to gluten to foods containing less than 20 parts per million (13,14,15) NCGS subjects can be more liberal and titrate their exposure to gluten as needed to avoid symptoms." http://ajgastro.gastrolib.be/ajg/journal/vaop/ncurrent/full/ajg201441a.html
  21. Apologies if this has already been discussed recently. Those of us who are diagnosed celiac or ncgs by a doctor, are not the point of the following article. The point is to take those who suffer some symptoms medically, who self-diagnose gluten is their problem, and find out what percent of that small group (population-wise) can in fact eat gluten without those symptoms arising. I have no idea if the self-diagnosed ncgs (non-celiac!) group in the USA is 50,000 or 500,000, or even in the millions. Note the doctors doing the study, very much assert that ncgs is a very real condition, what they are addressing is the accuracy of diagnosis for the very large group of self-diagnosing people. This is the article: http://www.ncbi.nlm.nih.gov/pubmed/23648697 Here is an explanation in English, and runner's world has a sizeable audience: http://www.runnersworld.com/nutrition-for-runners/are-you-really-gluten-sensitive Note that the elimination of Fodmaps by the researchers is important: these foods may themselves cause distress, and it is possible they cause the gut to react more readily with gluten (which may be an issue already researched and analyzed elsewhere). So perhaps 10% or less of those who self-diagnose as gluten sensitive for their symptoms, have got it right...pretty serious mistake, depending what their real issue is. In the 1960's, this was called "reader's digest disease", the digest would feature some arcane disease each month, and tens of thousands of old people would deluge their doctors convinced they had it...until the next month (now seeing the same effect with the aarp magazine, apparently).
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