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  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. Hi Im new here. I've been suffering from GERD and IBS for past two years. I have done several courses of different medicines including PPIs to no avail. I have been researching on celiac desease and gluten sensitivity for past few weeks and out of curiosity I took the tTG and DGP antibodies test. My results are as follows, tTG-igA: 8.29 U/ml tTG-igG: 20.0 U/ml normal: values less than 12 U/ml equivocal: values between 12 -18 U/ml positive: values greater than than 18 U/ml ------------------------------------------------------------------------------------------ DGP-igA: 21.7 AU/ml DGP-igG: 14.75 AU/ml normal: values less than 15 AU/ml equivocal: values between 15-30 AU/ml positive: values greater than than 30 AU/ml ------------------------------------------------------------------------------------------ so basically my tTG-igG is positive and DGP-igA is equivocal. how would this result be interpreted?
  3. Hi everyone! I’m a 24 year old woman suffering from intense, crippling abdominal and rectal pain ever since my celiac diagnosis two years ago and was wondering if anybody else experiences anything similar. Every now and then, I get an intense cramping/stabbing/burning pain in my lower abdomen and back, mostly on the left side. It comes on gradually and feels “twingy,” and sometimes spontaneously resolves without much pain and other times develops into excruciating pain that can last up to 10 hours. The pain is colicky, so it ebbs and flows in intensity, going from 3/10 pain to 10/10 keel over and help kind of pain. I frequently will feel an intense need to have a bowel movement, and almost always the BMs will be normal and formed, occasionally they will be a little fluffier and floatier than normal. On a regular day i will average 1-2 BMs, but on these days I can have up to 10 BMs. I almost never have constipation or diarrhea. Frequently these episodes are also accompanied by intense waves of rectal pain, which feel like I’m being knifed up my butt. Patterns I’ve noticed: -frequently happens the day after I’ve been drinking more heavily than normal, which makes me think dehydration could play a role -frequently happens in the week leading up to my period, which makes me think hormones could be playing a role -started shortly after going gluten-free. My doctor does not think this sounds directly related to celiac, but I wonder if cutting out common sources of fiber like whole grain wheat could have caused a problem. I started a fiber supplement (psyllium husk) per my doctor instructions yesterday, we’ll see if that helps Things that make it feel better- -NSAIDS. Can’t explain this one, doesn’t make much sense to me but for whatever reason ibuprofen and naproxen are one of the only things that really make a big difference. I try not to take them unless the pain is unbearable because both of my previous endoscopies have shown ulcers in my stomach -heat- heating pads and a hot bath feel very nice I have also had a pelvic ultrasound during the pain to rule out ruptured ovarian cysts. I’m good about being gluten-free and don’t really think this has to do with being glutened. I last had an endoscopy about 6 months ago and my duodenum seems to be fully healed, other than some residual intraepithelial lymphocytes (Marsh 1). My ttg and ema have also fully normalized. I never experienced this type of pain before my diagnosis and going gluten-free. I saw my GI doc yesterday and he suspects sigmoid colon spasms and proctalgia fugax, which is ultimately unharmful just unpleasant (a form of IBS). Today I had one of the worst episodes I’ve ever had of this pain, going on 9 hours of crippling pain now. I started fiber supplements yesterday and hopefully with time it will help, but I’m feeling very frustrated and worn out by this and was just wondering if anyone else experiences something similar, what you do, just really anything. It really interferes with my life and puts me out of commission for the whole day when it hits. Extra thought: I have a lifelong history of “overactive nerves” one could say. As a child I had severe sensory integration disorder which resolved with therapy and time I guess, I have severe hyperhidrosis and had a thoracic sympathectomy 9 years ago to sever the nerves that cause sweating in my hands (my surgeon said my nerve bundles were the biggest he’d ever seen), I have chronic shooting wrist and hand pain for no apparent reason, notalgia fugax, an unknown itchy spot on my back likely from nerve overactivation, etc etc. I’ve read from Stanford and other sources that IBS could be caused from hypersensitization of nerves in the colon. Anyway these things could mean nothing, but just an observation I had about myself and am interested to hear others thoughts and opinions!
  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. Hi all, This is my first post here. I'm a college student and I have to eat most meals on the go, I'm also a nanny and have no choice but to cook and eat in a mixed kitchen for work. I also live in a home with HEAVY gluten eaters. It is not financially viable at this point in my life for me to buy my own pots and pans, utensils, etc. I have two main parts to my problem: 1. It is so overwhelming to be gluten free when I eat most of my meals on a college campus where they don't pay any mind to if the food is being cross contaminated. I try to bring lunch and snacks, but I am out for 15-18 hours a day and forget or get hungry and need to buy additional food while I'm out. What are some meal prep tips y'all can give me? How can I ensure these meals stay gluten free when I'm stuck living in a home with a mixed kitchen? I don't have a dishwasher, so even washing the dishes makes me nervous. I'm trying to learn how to cook but my anxiety over gluten is at the point where I don't even want to be around the kitchen. 2. I've been gluten free for a year now, since my diagnosis with both celiac and hashimoto's disease. I'm VERY sensitive to cross contamination. I work at this so hard, I'm hyper vigilant, I annoy restaurant employees asking them to change utensils and wipe surfaces and change gloves, I annoy everyone in my home about cleaning up between prep, I obsessively read labels. I feel like being gluten free is a full time job, and I STILL get severely glutened regularly. It has happened twice just this week, and I get so sick every time. What else am I supposed to do? How much hidden gluten is there? On this one, I really could just use some support and maybe quick tips on how to keep this from feeling so difficult. Thank you so much in advance. This whole thing is so difficult. I'm young and want to be able to enjoy meals out with friends, cook for the kids I watch, eat on campus, enjoy my life, and just to not be sick half the time.
  6. Hi guys. I've had three blood tests for celiac, all negative, and one biopsy that I'm still waiting for the results of. I have a lot of the symptoms, and my body has been breaking down and getting sicker over the past year. I have gut pain, constipation, piles, sometimes loose stools, gas, muscle pain, bone pain, a fuzzy/light head, noise and light sensitivity, bleeding gums and mouth ulcers. But the worst is chronic acid reflux, which has been resistant to treatment. The endoscopy I had on April 30th found a hiatal hernia, which I didn't have when I had my first endoscopy in 2015. The area was full of acid and bile, which I have always been able to feel, 24/7. For the last 6+ years I've been on the IBS and the acid reflux diet. No FODMAPS (which seems to be everything), and nothing with acid in, like citric acid. I've decided to go gluten-free now, without waiting for my results, and my father has just found out that his last blood test had raised transglutaminase and was "strongly suggestive of coeliac," which has motivated me even more. But finding gluten-free alternatives is proving difficult, especially bread. The problem isn't so much taste, as acid and IBS triggers in the ingredients. All the gluten-free breads I can find contain acids like citric acid, honey, vinegar, and apple, and others contain possible IBS triggers like bamboo fibre (?) and Quinoa, which the jury seems to be out on in regards to IBS. I suspect I have to continue avoiding these ingredients as my gut is very painful and sensitive, and I'm worried about worsening gut symptoms instead of healing. Are these ingredients actually safe when the problem is (or could be) gluten? Or do they tear through the gut if the gut is damaged? I wouldn't bother with bread, but I'm 10 pounds underweight and I get a lot of flak about it, and honestly I've been getting most of my calories through bread, and don't know how to get calories without it. There is so much food I have to avoid, if not "IBS" triggers, then acidic foods. I won't touch something acidic with a barge pole! I don't really know what my question is, I feel stumped here! But any ideas would be much appreciated. Also, I live in the UK, so some brands aren't available here. I wondered if supermarket-own gluten-free bread is OK for celiacs, as although it has the crossed grain symbol, isn't it manufactured in the same place, and therefore possibly contaminated? I thought I had this gluten-free-thing figured out months in advance (I've done a lot of reading since my doctor suggested celiac last year), but turns out, I haven't the foggiest what to do. I'm thinking of quitting food, to be honest with you. Thanks for any replies!?
  7. Celiac.com 05/23/2018 - Yes, we at Celiac.com realize that rye bread is not gluten-free, and is not suitable for consumption by people with celiac disease! That is also true of rye bread that is low in FODMAPs. FODMAPs are Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols. FODMAPS are molecules found in food, and can be poorly absorbed by some people. Poor FODMAP absorption can cause celiac-like symptoms in some people. FODMAPs have recently emerged as possible culprits in both celiac disease and in irritable bowel syndrome. In an effort to determine what, if any, irritable bowel symptoms may triggered by FODMAPs, a team of researchers recently set out to compare the effects of regular vs low-FODMAP rye bread on irritable bowel syndrome (IBS) symptoms and to study gastrointestinal conditions with SmartPill. A team of researchers compared low-FODMAP rye bread with regular rye bread in patients irritable bowel syndrome, to see if rye bread low FODMAPs would reduce hydrogen excretion, lower intraluminal pressure, raise colonic pH, improve transit times, and reduce IBS symptoms compared to regular rye bread. The research team included Laura Pirkola, Reijo Laatikainen, Jussi Loponen, Sanna-Maria Hongisto, Markku Hillilä, Anu Nuora, Baoru Yang, Kaisa M Linderborg, and Riitta Freese. They are variously affiliated with the Clinic of Gastroenterology; the Division of Nutrition, Department of Food and Environmental Sciences; the Medical Faculty, Pharmacology, Medical Nutrition Physiology, University of Helsinki in Helsinki, Finland; the University of Helsinki and Helsinki University, Hospital Jorvi in Espoo, Finland; with the Food Chemistry and Food Development, Department of Biochemistry, University of Turku inTurku, Finland; and with the Fazer Group/ Fazer Bakeries Ltd in Vantaa, Finland. The team wanted to see if rye bread low in FODMAPs would cause reduced hydrogen excretion, lower intraluminal pressure, higher colonic pH, improved transit times, and fewer IBS symptoms than regular rye bread. To do so, they conducted a randomized, double-blind, controlled cross-over meal study. For that study, seven female IBS patients ate study breads at three consecutive meals during one day. The diet was similar for both study periods except for the FODMAP content of the bread consumed during the study day. The team used SmartPill, an indigestible motility capsule, to measure intraluminal pH, transit time, and pressure. Their data showed that low-FODMAP rye bread reduced colonic fermentation compared with regular rye bread. They found no differences in pH, pressure, or transit times between the breads. They also found no difference between the two in terms of conditions in the gastrointestinal tract. They did note that the gastric residence of SmartPill was slower than expected. SmartPill left the stomach in less than 5 h only once in 14 measurements, and therefore did not follow on par with the rye bread bolus. There's been a great deal of interest in FODMAPs and their potential connection to celiac disease and gluten-intolerance. Stay tuned for more information on the role of FODMAPs in celiac disease and/or irritable bowel syndrome. Source: World J Gastroenterol. 2018 Mar 21; 24(11): 1259–1268.doi:  10.3748/wjg.v24.i11.1259
  8. Forum Members, Has anyone else seen this new research on the Epstein-Barr Virus and it possible link to various Auto-immune diseases including Celiac disease. https://medicalxpress.com/news/2018-04-epstein-barr-virus-linked-diseases.html I will quote the whole article for easy reading as it appeared on Medical Express. It is very similar to the research reported by Popular Science approx. a year that mentioned the link between a reovirus (rotavirus) and how it might trigger higher Celiac rates in Finland. I think Ennis_tx started a thread on it. Epstein-Barr virus linked to seven serious diseases April 16, 2018, Cincinnati Children's Hospital Medical Center This electron microscopic image of two Epstein Barr Virus virions (viral particles) shows round capsids—protein-encased genetic material—loosely surrounded by the membrane envelope. Credit: DOI: 10.1371/journal.pbio.0030430.g001 A far-reaching study conducted by scientists at Cincinnati Children's reports that the Epstein-Barr virus (EBV)—best known for causing mononucleosis—also increases the risks for some people of developing seven other major diseases. Those diseases are: systemic lupus erythematosus (SLE), multiple sclerosis (MS), rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), inflammatory bowel disease (IBD), celiac disease, and type 1 diabetes. Combined, these seven diseases affect nearly 8 million people in the U.S. Study results published April 12 in the journal Nature Genetics. The project was led by three scientists: John Harley, MD, PhD, Director of the Center for Autoimmune Genomics and Etiology (CAGE) at Cincinnati Children's and a faculty member of the Cincinnati VA Medical Center; Leah Kottyan, PhD, an immunobiology expert with CAGE; and Matthew Weirauch, PhD, a computational biologist with the center. Critical contributions were provided by Xiaoting Chen, PhD, and Mario Pujato, PhD, both also in CAGE. The study shows that a protein produced by the Epstein-Barr virus, called EBNA2, binds to multiple locations along the human genome that are associated with these seven diseases. Overall, the study sheds new light on how environmental factors, such as viral or bacterial infections, poor diet, pollution or other hazardous exposures, can interact with the human genetic blueprint and have disease-influencing consequences. "Now, using genomic methods that were not available 10 years ago, it appears that components made by the virus interact with human DNA in the places where the genetic risk of disease is increased," Harley says. "And not just for lupus, but all these other diseases, too." The full impact of this study could take years to explore. Here are some of the initial implications: New concern about the 'kissing disease' EBV is a strikingly common virus. In the US and other developed nations, more than 90 percent of the population becomes infected by age 20. In less-developed nations, 90 percent of people become infected by age 2. Once infected, the virus remains in people for their entire lives. Mononucleosis, which causes weeks of extreme fatigue, is the most common illness caused by EBV. Mono was nicknamed the "kissing disease" years ago because the virus spreads primarily via contact with saliva. Over the years, scientists have linked EBV to a few other rare conditions, including certain cancers of the lymphatic system. Harley, who has devoted much of his career to studying lupus, found possible connections between lupus and EBV years ago. That work includes proposing mechanisms that the immune system uses in response to the virus that lead to lupus, and showing that children with lupus almost always are infected with EBV. Today's study adds weight to those lupus findings and adds six more well-known diseases to the list. "This discovery is probably fundamental enough that it will spur many other scientists around the world to reconsider this virus in these disorders," Harley says. "As a consequence, and assuming that others can replicate our findings, that could lead to therapies, ways of prevention, and ways of anticipating disease that don't now exist."So far, no vaccine exists that will prevent EBV infection. "I think we've come up with a really strong rationale for encouraging people to come up with more of an effort," Kottyan says. "Some EBV vaccines are under development. I think this study might well encourage them to push forward faster and with rededicated effort." How EBV hijacks our immune system When viral and bacterial infections strike, our bodies respond by commanding B cells within our immune systems to crank out antibodies to battle the invaders. However, when EBV infections occur, something unusual happens. The EBV virus invades the B cells themselves, re-programs them, and takes over control of their functions. The Cincinnati Children's research team has discovered a new clue about how the virus does this, a process that involves tiny proteins called transcription factors. Our bodies have about 1,600 known transcription factors at work within our genome. Each cell uses a subset of these to become what they are and to respond to their environment. These proteins constantly move along the strands of our DNA, turning specific genes on and off to make sure cells function as expected. Credit: Cincinnati Children's However, when the transcription factors change what they do, the normal functions of the cell can also change, and that can lead to disease. The Cincinnati Children's team suspects that the EBNA2 transcription factor from EBV is helping change how infected B cells operate, and how the body responds to those infected cells. The new paper shows that seven seemingly unrelated disease states actually share a common set of abnormal transcription factors, each affected by the EBNA2 protein from the Epstein-Barr virus. When these EBNA2-related clusters of transcription factors attach themselves to one portion of the genetic code, the risk of lupus appears to rise. When those same transcription factors land on another part of the code, the risk of multiple sclerosis appears to rise. And so on. "Normally, we think of the transcription factors that regulate human gene expression as being human," Kottyan says. "But in this case, when this virus infects cells, the virus makes its own transcription factors, and those sit on the human genome at lupus risk variants (and at the variants for other diseases) and that's what we suspect is increasing risk for the disease." New leads emerge for improving treatment It remains unclear how many cases of the seven diseases listed in the study can be traced to prior EBV infection. More genomic analyses involving many more patients with these diseases will be required to make reliable estimates. "The impact of the virus is likely to vary across the diseases," Harley says. "In lupus and MS, for example, the virus could account for a large percentage of those cases. We do not have a sense of the proportion in which the virus could be important in the other EBNA2-associated diseases." However, the breakthrough identification of specific transcription factors connected to EBV infections opens new lines of study that could accelerate efforts to find cures. "This same cast of characters is a villain in multiple immune-related diseases," Weirauch says. "They're playing that role through different ways, and doing it at different places in your genome, but it's the same sinister characters. So if we could develop therapies to stop them from doing this, then it would help multiple diseases." A number of compounds—some experimental, some approved as medications for other conditions—already are known to be capable of blocking some of the high-risk transcription factors listed in the paper, Weirauch says. Teams at Cincinnati Children's have begun deeper studies of some of these compounds. Findings go far, far beyond EBV While the EBV-related findings involved more than 60 human proteins linked to seven diseases, the Cincinnati Children's research team already has taken a huge next step. They applied the same analytic techniques to tease out connections between all 1,600 known transcription factors and the known gene variants associated with more than 200 diseases. The results of that massive cross-analysis also appear in today's study. Intriguing associations were documented involving 94 conditions. "Our study has uncovered potential leads for many other diseases, including breast cancer," Harley says. "We cannot possibly follow up on all of these, but we are hoping that other scientists will." After devoting decades of research to hunting down the causes of lupus, Harley says this study represents the most important discovery of his career. "I've been a co-author in almost 500 papers. This one is more important than all of the rest put together. It is a capstone to a career in medical research," he says. Software behind discoveries to be made public Detecting and tracking the activities of these transcription factors took years of work involving dozens of laboratory and computational experts. The project required gathering massive sets of genetic data, then analyzing every genetic change affecting the activity of the virus. Doing this required creating two new algorithms, called RELI and MARIO, which were developed at Cincinnati Children's by Weirauch and colleagues. Both software tools and a related website will be made publicly available. "We are going to great lengths to not only make the computer code available, but all of the data and all of the results," Weirauch says. "We think it's an interesting approach that could have implications for many diseases, so we're contacting experts on the various diseases and sharing the results and seeing if they want to collaborate to follow up on them." Explore further: Study: Epstein Barr virus protects against autoimmune disease More information: John B. Harley et al, Transcription factors operate across disease loci, with EBNA2 implicated in autoimmunity, Nature Genetics (2018). DOI: 10.1038/s41588-018-0102-3 Journal reference: Nature Genetics Provided by: Cincinnati Children's Hospital Medical Center It is me again. What do you think have they found the trigger for Celiac disease. We know stress is common before a Celiac disease diagnosis and having Mono would definitely qualify for stress. Has one one else thought stress was their trigger? And why I was tested for Mononucleosis in the fifth grade I don't think it was the cause of my Celiac disease since I always had GI problems as a kid but in cause you have had Mono/EBV it might be something worth being aware of. I have had herpe simplex which is a similar disease that causes mouth sores often and my sores (ulcers) virtually went away when I started my gluten free diet. . . . later keep in check by taking the amino acid Lysine. Though who knows it (EBV/Mono) might of made it worse. Maybe I was only NCGS at the time and this could/might of pushed into the Celiac territory? (this would make great article on celiac.com by the way) if the admin thinks it is something worth reporting on. Here is a great overview on EBV/Mono "Kissing Disease" if you have ever wanted to know/wondered what it is and if you have ever had it. http://archive.boston.com/news/health/articles/2008/10/06/why_is_there_no_vaccine_against_infectious_mononucleosis/ *****This is is not medical advice but I hope it is helpful. 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.” 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,
  9. TL;DR Mom is a celiac. Father, Brother are lactose intolerant. Sister has IBS problems as well. I believe I have gluten allergy, even though every doctor test is negative. But I do have geno-type for celiac. Marijuana has become my only solution to stop the pain and get hours of relief. No other medicine works. but pot lets me go to work, without crapping my pants and getting paid to s$#&. Anyone else in my particular situation or does everyone else feel it differently? Hello, My name is Ryan and I am a twenty-four male, 300lbs, 6ft 4in. Ive been haunted by stomach/head aches for almost my whole life. Gaining depression in middle school, which downward spiraled by the time I was 20-21. Ive been diagnosed with Chronic Lyme Disease which is, I guess, controversial among physicians on whether or not it is actually a real thing. My Dr. gave me that diagnosis at 16, after going to him with Lyme for the 8th time. My mom figured out she was a celiac when I was 20 years old, so I then started on a gluten-free diet and felt good, but didnt realize that it was actually helping me. I went back on gluten to have the testing done, but it came back negative. So I said okay, I'm not allergic to gluten it must be my imagination or something else and went on my way. Had two more doctors tell me I probably wasnt Gluten intolerant. I then started to get serious urinary issues, and started to go to urologists. They couldnt find anything wrong, so I went to a GI and they told me nothing was wrong, after doing all the testing over the years, they said I wasnt allergic to Lactose or Gluten, however my most recent GI said I have a Geno-type for it. MFer*** I know its already here. It doesnt take but an hour and I am in gut wrenching pain and cant get off the toilet for sometimes hrs, with breaks in between (4 times on) and the pain and discomfort lasts for hrs. The doctor has put me on every kind of medicine and nothing works. He said well you dont have anything we test for, so I'm just going to say you have IBS. Which still makes sense, because there is times, I know I havent touched gluten ( I dont think, I'm not a very good label checker) or cheese and I'm still in the BR. I am currently on 50MG Amytriptaline (spelling) for the depression, urinary issue and intestinal inflammation(whether its there or not, the gastro put me on it, and it keeps the other two things at bay, so I cant go off it. However, it doesnt do too much for the stomach problem. The only solution I have found is Marijuana, which I have only recently started (1yr), but man does it make a difference. Now I can have a full time job, but I have to smoke to go to work. Which isnt my most favorite thing to do , but Ive gotten used to it and it helps me tremendously. So its become my catch all illness defeater. However, it only puts my intestines on hold(how long depending on how much pot, but usually a small amount keeps my stomach at bay for about 6-8 hrs. I can suffer the last hr at work, but at least I'm not in the bathroom for my whole shift. Which is great, its an amazing feeling to be at work without something plaguing you. I still dabble in gluten, like 1 slice of pizza, here and there (bc im supposed to be not gluten intolerant) but the devil strikes every time. Im sure Ive missed some stuff, but would like some feedback on the route I should take, get some insight, my wife said I should go to a holistic doctor, which has amazing reviews near us, but its 500 dollars cash to get the evalution and its not covered by insurance. She thinks I'm allergic to soy, which I guess is in both lactose and gluten?? But ive never been tested for that. I want some light to follow. Thanks Is it typical to feel an attack so fast? It happens between 15 minutes to 2 hrs, giving the span, but usually an hour. Does everyone react the same way to gluten? - I dont get diarrhea or constipation, I get a little of both, its loosely packed and hard to pass with excruciating pain. Other times ( I think this is the IBS part), it'll just come out of no where, but its not super painful, but I cannot hold it at all. Could all of my problems be Gluten/Lactose...or just part of it/none of it? Has anyone else gotten a negative test, but still said hell with it, Gluten Free? Are there any good, well organized mega threads for stuff to not touch if you're allergic to gluten, especially lesser known things (to avoid oops moments)
  10. Hello, I don't know if my topic fits better here, but I didn't know where to categorize it. In 2011 I've been diagnosed with celiac disease and since then I've been on a very strict diet, finally starting to feel better in 2014. In the meanwhile, I also had a laparoscopic surgery for 3rd stage endometriosis, and last year I was diagnosed with IBS, lactose intolerance, as well as insulin resistance and systemic candidiasis. Since last month I'm also on therapy for IBD (the doctors are suspecting microscopic colitis, but colonoscopies confirmed atypical inflammation only). Therapy for Candida (Diflucan) didn't help, and I've been recommended to adapt my diet. I was wondering if anyone has experience in dealing with other diets, in particular for Candida? Most of the gluten-free products are starchy, so what do you actually eat? Foods usually recommended for this, like leafy vegetables as well as spices, are impossible for me to eat - actually, I feel sometimes like most of the foods make me feel even worse and I keep losing weight. I hope someone can share their experience, thank you!
  11. 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.
  12. Well, for starters I think I am most likely like most people here. I have been struggling with a variety of symptoms, and trying to figure out what is bothering me has been a total guessing nightmare, with very little help from doctors. Even though I’ve gone to see them so many times. I recently found this biotech company that helps people find out if they really have a gluten celiac problem, or if it is something else. Using dna through hair or saliva, it was pain free, which was awesome! They tested me for a combination of intolerances/allergies/etc. My dietician referred me to them. It’s a place called Lab 600, they have a dot com and I got some testing done with them direct to their lab service and found out it is the same lab company that the allergist uses that I was going to go see next month. He wanted 1,100 for the testing at his office! The lab fee from the lab company itself was only $99 direct. So I went direct to them. They gave me Physician accepted results for my family doctor to keep on file and it cost me way less to get real answers without paying big prices. I wanted to let everyone else know because dealing with doctors who inflate prices is ridiculous, and I think it should be regulated or illegal to increase rates tgat high! Anyhow, I thought gluten was what was bothering me and my test came back it let me know that it was actually lactose. I had no idea, I really thought that it was a celiac issue. I got my daughters checked as well. One of them was scott-free no issues, the other one did come back with gluten intolerant results, with a wheat allergy and they also found out she was vitamin D deficient. So we have started to give her vitamin D supplements, and she has been starting to feel way better. So if this experience can possibly help someone else here I wanted to post, as I have been using the forum here and many other sites trying to get advice through all the symptoms and chaos of trying to figure out what was going on with myself, and I know how stressful it can be. Good luck to everyone!
  13. Hi fellow celiacs! I have been diagnosed with celiac disease when I was 19 years old, 13 years ago! I have always face my diagnosis with optimism and a positive mind but as I grew older I started to feel a little hopeless sometimes about all my health issues that may or may not be related to celiac disease. I have always consider that I had a good health overall but now, at 32 I have a diagnosed celiac disease, I take mild medication for anxiety/depression, two years ago I started to have a hormonal imbalance and digestive disorders like ibs (maybe ¿?) and I often suffer from brain fog. I have always have high myopia, runner's knee, seasonal allergies... I am very careful with my gluten free diet but with the years If I accidentally get some gluten I get itchy blisters and one month ago I got something similar to eczema. It is my first time in a forum since I have started wondering if there is something else that I should be taking care of. I don't want to get to obsessed with my health but the truth is that I feel that I am young to have all this little health concerns. I am exploring alternative medicine solutions, specially related to nutrition to ease my different issues and heal my gut. I don't know any professional in my country that can take a holistic look at my health so I have done most of the research by myself in the internet which can be a little confusing and overwhelming at times... Any word of encouragement or advise will be much appreciated : ) All the best to you,
  14. I have been a celiac for almost 13 years now, over the years of doing the treatment I started to feel that I became more sensitive to other foods. It is really frustrating, I don't really know where to begin to finally heal myself :/ All the best,
  15. Celiac.com 01/24/2018 - Irritable bowel syndrome can be a frustrating condition for both patients and doctors. It can be difficult to diagnose, and the symptoms can be unpleasant, to say the least. For many people with IBS, medication does not adequately treat the symptoms. Many people just suffer and live with the IBS and its symptoms. Now, a new study may bring some hope to people with IBS. The study was conducted by Manju Girish Chandran, and colleagues from the Mary Breckinridge ARH Hospital in Hyden, Kentucky. For the study, 189 patients consumed 2 to 3 cups of homemade yogurt every day and recorded their symptoms. Their responses were assessed every 2 months for 6 months. At the end of the study, 169 patients saw their IBS go into remission within 6 months. And these weren't some special set of patients. They were true IBS sufferers. Some patients in this study had lived with symptoms of irritable bowel syndrome for 9 or 10 years. These results show that the daily consumption of homemade yogurt can lead to a complete resolution of symptoms in patients with irritable bowel syndrome in the vast majority of IBS patients. "Our study is based on the fact that there is an internal gut–brain microbiome axis," Dr Chandran told Medscape Medical News. "If you modulate the intestinal microbiome, you can actually achieve remission in some cases." That is one of the reasons Dr Chandran and her colleagues wanted to assess the potential of homemade yogurt with Lactobacilli to influence the gut microbiome. In this study, 89% of the study participants saw complete remission, which is defined as the relief of irritable bowel syndrome symptoms and one or two normal bowel movements daily. In addition to being cheap, says Dr Chandran, the yogurt can be enjoyed plain, or mixed with fruit or made into a smoothie as part of a normal diet. Dr. Chandran reported the results of the study at the World Congress of Gastroenterology. This is one of the more exciting studies on IBS in a long time. The idea that incorporating simple homemade yogurt into the diet can lead to a remission of IBS is nothing short of earth-shattering. How to make the yogurt used in the study: The yogurt is cheap and simple to make. First, boil a gallon of milk for 5 minutes and let it cool to lukewarm. Next, mix in 1 cup of Dannon plain yogurt, which is used as a starter and source of Lactobacilli. Place in an oven with the light on overnight (do not turn the oven on), and then refrigerate the next morning. Basically, you want it to sit all night at about 110 degrees F. Save 1 cup from each batch to use as a starter for the next batch. This news is potentially a game-changer for IBS-sufferers, since the solution is both simple and affordable for most people. Do you or anyone you know have IBS? If you try this treatment, please let us know how it works for you. Read more at: Medscape.com
  16. Dr. Vikki Petersen D.C, C.C.N

    Can IBS be Reversed?

    Celiac.com 02/23/2017 - IBS, also known as Irritable Bowel Syndrome, is a miserable condition. If you've ever had food poisoning or experienced Montezuma's revenge from travel, you have a good idea of how someone who suffers from IBS may feel. But while your food poisoning passed in a couple of days, imagine what it would be like to live like that each and every day. You have loose bowel movements anywhere from 4 to 20 times per day. And often they are so urgent that making it to the bathroom is not always possible. You don't need to think about that scenario for long to realize why patients with IBS often choose not to venture far from home. They can literally become ‘house bound' by this condition. The chronic diarrhea often switches to constipation for several days before the diarrhea resumes, but they rarely have ‘normal bowel function'. Imagine if you were diagnosed with this condition. You would want to know the treatment and, hopefully, the cure. Most doctors will tell you that there is no cure. They'll also start talking to you about your stress levels. Do you think it's more common for the stress to precede IBS or to be a result of it? Do you think it's at all stressful to never know when you'll next need to ‘dash' to the restroom? Do you think it's at all stressful to constantly have to contemplate what it would be like if you DIDN'T successfully make it to the restroom? Yes, in my experience I do find that in the vast majority of cases the stress is secondary to the condition, not primary. That's my experience, but I also haven't met a case of IBS that I haven't cured – providing the patients were compliant, of course. If you look online, this is what ‘WebMD' has to say about the condition: "Although there currently is no cure for IBS, careful attention to diet and stress management should help keep your symptoms under control and perhaps even prevent them from coming back." "In many people who have IBS, eating may trigger symptoms. But for most people, there is not a particular type of food that triggers symptoms." "Increasing the amount of fiber in your diet can help control constipation. High-fiber foods include fresh fruits (raspberries, pears, apples), fresh vegetables (peas, brussels sprouts), wheat bran, and whole-grain breads and cereals. Beans such as kidney, pinto, and garbanzo are also high-fiber foods, but they should probably be avoided if gas is one of your symptoms." "You can take steps to reduce the possibility that certain foods will cause symptoms, such as avoiding or limiting gas-producing foods (including beans and cabbage), sugarless chewing gum and candy, caffeine, and alcohol." Okay. So according to them you should eat wheat bran, but you should avoid beans and cabbage. To say I disagree would be an understatement. I personally have not met a single person with IBS who wasn't gluten intolerant and I have never found anyone with this ailment who couldn't eat some beans and cabbage. Gas is a result of poorly digested food. The cause isn't typically the ‘gassy' food, but rather a food intolerance that is creating stress on the small intestine, resulting in a compromised ability to produce enzymes and properly digest food. Gassiness is an easy symptom to cure, but avoiding beans and cabbage is not typically the answer. Let's look at some recent research that shines some light on this topic: Just last month Gastroenterology published an article entitled ‘A Controlled Trial of Gluten-Free Diet in Patients with Irritable Bowel Syndrome-Diarrhea: Effects on Bowel Frequency and Intestinal Function'. This study was performed by a team of doctors at the Mayo Clinic. Their goal was to discover whether IBS patients with diarrhea as their predominant symptom could benefit from a gluten-free diet. They performed genetic testing for celiac genes on 45 IBS patients who fit their criteria. Twenty-two patients were put in the gluten containing diet group, while twenty-three were put into the gluten-free group. In each group, 50% had the celiac genes and 50% of the group did not. Bowel function (number of bowel movements) and permeability, as well as the production of inflammatory chemicals were measured. Those on the gluten containing diet had more bowel movements per day, with the greater number seen in those positive for the celiac gene. So too was intestinal permeability (leaky gut) more prevalent in those consuming gluten and positive for the celiac gene. While effects of gluten were certainly stronger in those with the celiac gene, even those without the gene were affected when compared to the gluten-free group. The authors' conclusion was that gluten alters bowel barrier function in IBS patients with predominant diarrhea, particularly among those who carry the celiac gene. They concluded with this statement: "These findings reveal a reversible mechanism for the disorder." Did those who reacted to gluten suffer from gluten sensitivity? Is that why they still reacted negatively to gluten despite not carrying the gene for celiac? It would be interesting to find out. In my clinical experience, it is often the case that a patient suffers from IBS but does not have celiac disease. We find them to be gluten sensitive. The treatment of avoiding gluten is still the same, but these patients do not carry the celiac gene. It seems that while a gluten-free diet isn't the answer for 100% of IBS patients, it is definitely a component in enough people suffering from IBS that it would be a shame to not test for it. Do you agree? It seems to be a better course than recommending eating gluten and avoiding beans, while stating there is no cure. I'm sorry if my comments seem caustic, but it is upsetting to see such advice given that, in my opinion, does next to nothing to improve the lives of those who are suffering. If you have IBS or know of someone who does, do consider getting testing for celiac disease and gluten sensitivity. Remember that these tests aren't perfect. Even if you test negative, it would do no harm to try a 30 day gluten elimination diet. Let me know how it goes and please contact me should you have any questions. Our destination clinic treats patients from across the country and internationally, so you don't need to live locally to receive help. You can call us for a free health analysis at 408-733-0400. Reference: Gastroenterology. 2013 Jan 25. pii: S0016-5085(13)00135-2. doi: 10.1053/j.gastro.2013.01.049. A Controlled Trial of Gluten-Free Diet in Patients with Irritable Bowel Syndrome-Diarrhea: Effects on Bowel Frequency and Intestinal Function. Vazquez-Roque MI, Camilleri M, Smyrk T, Murray JA, Marietta E, O'Neill J, Carlson P, Lamsam J, Janzow D, Eckert D, Burton D, Zinsmeister AR.
  17. 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,
  18. I was inspired today for two reasons. (Sorry for the formatting) 1) my brother recently had an emergency that required hospitalization and two stents to be put in his heart. Every Hour Counts/Every Person Counts 2) this new research about Zika and the implementation gap/clinical delay in recognizing a disease in clinical setting. http://www.nejm.org/doi/full/10.1056/NEJMp1707273 AS someone who has had BOTH Celiac and Pellagra. I can tell you that it can be difficult to tell them apart sometimes (most times). In many respects they look like twin(s). Both have GI problems as a presenting symptom’s. Both have Skin Issues in their presentations (clinical appearance). Both can have dementia/neurology symptoms. SO you can see how easily one can be confused for the other? And often one twin (disease) is picked over the other. What does this have to do with Zika. Only this Quoting the New England Journal of Medicine from the article and applies here when contemplating any disease’s symptom’s. “Translational gaps are not unique to Zika; similar challenges exist throughout the health care system. According to several estimates, it takes an average of 17 years for research evidence to reach clinical practice. 2 One study showed that patients receive only about 55% of the recommended processes involved in medical care. 3” So let’s say. Today they find a miraculous cure for Celiac disease or NCGS. . . it would take on average 17 years for doctor’s in Clinical settings to apply these technique’s to eradicate new Celiac cases/disagnoses from occurring. Now in this hypothetical case (which doesn’t exist yet) it would take another 17 years on average for doctors if they knew today that Pellagra (which they don’t) can mimic Celiac disease in a Clinical setting. But one does exist (it is not hypothetical) – a cure for Pellagra exists today. It has in fact existed for 100+ years and still doctors don’t recognize it today. Every hour/patient matters. And why I have tried diligently to educate other Celiac’s of this maddening fact. In 2015 a medical association was established of Pellagra occurring in/with a Celiac diagnosis. http://pubs.sciepub.com/ijcd/3/1/6/ Quoting from section 3. Pellagra and Celiac disease in this ground breaking research. Pellagra and celiac disease “The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [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].” So if their (NEJM) timeline is correct. It will be 2032 at the earliest for the Clinical delay to catchup to research. As I mentioned earlier it has been 100+ years since doctors’ have seen Primary Pellagra in a Clinical setting. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ And it isn’t Primary Pellagra that is the problem here. It is a phenomen that is called Secondary Pellagra. It didn’t know what it was either. And I have studied the topic extensively. see this entertaining thread where SIBO girl, Captain NCGS and Pellagra boy are superheroes saving others from their respective disease's They are all superheroes in their own right in my mind (hat tip to you both) and good luck on your continued journeys. Now back to my updated blog post on the "clinical gap" that is so devastating. See this link from the doctor’s healthy press (Yes doctors have to look things up too) that explains the difference very well. https://www.doctorshealthpress.com/food-and-nutrition-articles/pellagra-vitamin-b3-deficiency-causes-symptoms-and-treatment/ I will quote for reference. 1. Primary Pellagra “This form of vitamin B3 deficiency is related to a lack of nutrition, such as not getting enough eggs, meat, seafood, or green vegetables in your diet. Alcoholism is often a factor with primary pellagra, for the reason highlighted above. 2. Secondary Pellagra Those who regularly consume sufficient amounts of vitamin B3 may still deal with this condition. Secondary pellagra is the result of improper absorption of the nutrient, whether as a whole or partially. This is observed with gastrointestinal diseases that do not accept the niacin.” (Celiac disease) It is me again pellagra and celiac posterboy. So now we know what else it (Celiac disease) could be? Now the question remains will it take another 17 years for the doctor’s to have you checked for it or for you to believe a Vitamin might help you? Now Pellagra (and other B-Vitamin diseases) can be tricky to diagnose. Because for some diseases there are not good/reliable “blood serum” test’s to confirm the clinical suspicions. A cause and effect method is often used. If taken the B-Vitamin (NIACIANMIDE) helps your GI problems then Pellagra or at least Secondary Pellagra was a contributing factor in your GI problems. Dr. Prousky tested this theory. You guessed it almost 17 years ago. Next year will be 17 years and still this modern research has not trickled down to a Clinical setting. http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm And why I have been inspired to share my Celiac story of the road not taken. The Pellaga road was not taken in my diagnosis either. The doctor's did not know this could be a valid reaction to NCGS or Celiac Disease. Knowledge is power. Now you have the knowledge to do different and probably better than you are doing now if Secondary or Rebound Pellagra is causing some of your same GI problems and this is making your original Celiac disease symptom's even worse. This is mostly for those still looking for answer's despite being gluten free for 2 or 3 years and are still having "control" issues or have become ultra sensitive to many more proteins (food allergens) like even Corn for example. Pellagra was first diagnosed with corn based food stuffs. And promptly forgotten years ago. See this great newspaper summary of how "Pellagra in the South" presented itself 75+ years ago. It is actually a fairly new article about this topic. Only a year old. And found it amazing that others (though few) still talk about it today. http://www.timesfreepress.com/news/life/entertainment/story/2016/jul/12/clif-cleaveland-pellagrand-history-south/375065/ But doctor's haven't yet figured out that Rebound/Secondary Pellagra is estimated to occur in 58% (majority) of first diagnosed NCGS or Celiac patients. If the normal clincal adoption curve applies here then it will be another 15 year before doctor's acknowledge that indeed the corn allergy occuring in Celiac's is really from Secondary Pellagra. You have probably heard this phrase there is a "generation gap" . . . well if the trend holds in clincial adoptation and bleeding/leading research then indeed it will be another "generation" before this "Clincial Gap" will be closed. Then and only then will people begin to listen and get better . . .And I hate that for those still suffering . . . because every hour/patient/person matters. ****this is not meant to bee medical advice only the path I took. Yours might be different. But there is a 50/50 chance it might help. I don't know what else to say. With my changing life and farm responsibilities/realities I will not get to participate on this forum the way I once could so I wanted to say what happened to me with the hopes it might help those who might be still be suffering from rebound/Seconardary Pellagra triggerd by their NCGS/Celiac disease. You can rebound from Pellagra. I have praise bee to God! The Celiac diagnosis might still be retained if Secondary or Primary Pellgra was not the cause but if it (Pellagra) was the primary cause then the Secondary Celiac diagnoses/symptom's will improve with Niacinamide supplementation taken 2 to 3 times a day for 6 months I truly believe. I have emphasized the NIACINAMIDE form on my blog posts/in my threads because it is the non-flushing form of Niacin. see my earlier posterboy blog post for/on how to take Niacinamide FAQ and why you would want too. Or if you prefer you read this thread that talks' about Vitamin's and Mineral's role (or lack thereof role) on/in inflammation in the body. It focuses especially on how Magnesium and B-Vitamins can help depression. **** Again this in not medical advice. One size does not fit all. Some people do respond to supplementation. Some do not. You will only know if you try. . . . and sometimes you might have to try more than once to find the right form/Vitamin you need to take and why I have emphasized the Niacinamide form so you can learn from my mistakes! This is not the end of your journey. . . this is only beginning . . you will still want to supplement with the other (now) missing nutrients like Vitamin D (if you are low) or a good B-complex etc. and the Magnesium Citrate/Glycinate (mentioned in another thread) But I must end for now. I hope to update my blog sometime in the future (about the supplementation question and what helped me) but can't do so now. I would refer you to one of Ennis_Tx many post's on his supplementation program for now or one of Knitty Kitty's threads. They have both done very well with supplementation and are bedrock kind of people who can give you great advice learned from life's experience. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included posterboy by the grace of God,
  19. ok today is officially one week i've been gluten free and i haven't made any noticeable differences in feeling better. my first question is: how long should i wait to expect changes to occur? am i not giving it enough time? prior to going gluten free one of my issues was constipstion, as well as other health issues usually involving an upset stomach, nausea or an uneasy feeling in my stomach. but since going gluten free i have had a bowel movement different from usual. and today it was more loose and diarrhea like and it is very rarely like that. oh and about half way through the week i got a random rash pop up on one ankle???? advice or suggestions??
  20. Celiac.com 05/26/2017 - Can a gluten-free diet help improve symptoms in people suffering from IBS? A new study says yes, some of them, at least. More than 60% of patients with IBS suffer from bloating and abdominal pain after eating certain foods. In some patients, who do not have celiac disease or wheat allergy, these symptoms may be due to an adverse reaction to wheat and gluten. Several studies have suggested that anti-gliadin antibodies can be a useful benchmark for predicting which patients with irritable bowel syndrome will benefit from a gluten-free diet. However, the idea remained untested until recently, when researchers conducted a prospective study in IBS patients. An update on their research was presented at Digestive Disease Week. The research was conducted by María Inés Pinto Sanchez, MD, and colleagues at the department of medicine at McMaster University and the Farncombe Institute in Ontario, Canada. To better understand the usefulness of these predictors, the research team looked at 44 patients with IBS and 23 healthy volunteers, both before and after 1 month of adhering to a gluten-free diet. They assessed GI transit, GI symptoms, anxiety, depression, somatization and dietary habits. The team tested each subject for anti-gliadin antibodies, then stratified the patients based on the results. Patients with celiac disease were not included in the study. The investigators found that just over half (53%) of the IBS patients, and 25% of the healthy volunteers, tested positive for IgA or IgC anti-gliadin antibodies. Additionally, HLA DQ2/DQ8 genetic predisposition was comparable for both groups. IBS patients who tested positive for antigliadin antibodies, and who followed a gluten-free diet, showed overall improvement in symptoms, especially constipation (P = 0.01), diarrhea (P = 0.001) and abdominal pain (P < 0.001) while IBS patients who tested negative only experienced improvements in abdominal pain (P = 0.01). Compared with patients who tested negative, gluten-free IBS patients who tested positive saw more normalization in GI transit (OR = 1.75 95% CI, 1.06 - 3.06). Regardless of antibody status, all IBS patients saw comparable improvements in anxiety, somatization and well-being, but only patients who tested positive saw reduced depression scores. A gluten-free diet in patients who tested positive for anti-gliadin antibodies was associated with symptomatic improvement (OR = 8.54; 95% CI, 1.41-48.21), while other factors like changes in motility, dietary adherence or genetic risk were not. Their data led the team to conclude that anti-gliadin antibodies can be used to determine which IBS patients are more likely to see an improvement in symptoms, and in functionality. Interestingly, strict compliance with the gluten-free diet did not predict improvement, which indicates that gluten restriction, rather than gluten avoidance, may help to manage symptoms in these IBS patients. That means that patients might be able to get better by cutting back on gluten, instead of cutting it out of their diet entirely. Read more at Healio.com.
  21. I am new here and looking for help and answers. Thanks in advance for any help you can give. Despite frequent testing I've not been diagnosed with celiac yet but I do wonder if it's the cause of all my issues. I have myriad life altering symptoms and I'm desperately trying to get to my root cause. I’ve been really quite sick since I was a child, when I had extensive gastric issues, followed by chronic fatigue , a rash and depression as a teenager. I am 41 now and have a number of illnesses, most of them autoimmune: Hashimoto's hypothyroidism Psoriasis Likely autoimmune atrophic gastritis (under investigation) Pernicious anaemia (low B12) Rapid cycling type 1 bipolar disorder with psychosis that hasn't responded to treatment with over 20 different psychiatric drugs Migraine (three a week) Chronic fatigue syndrome Hypertension Fatty liver Metabolic syndrome Familial hypercholesterolemia Obesity Investigated for celiac 3 times but not detected however my gastro did observe that my gut was hugely distended and that my stomach sat forward. I have many other symptoms as yet unattributed: Rash on eyebrows and cheeks, although it is mostly down the sides of my nose and not under my eyes Circular rash on chest Flaky rash on scalp Poor balance Poor positional awareness Clumsiness Weakness and muscle loss Foggy thinking Very poor memory Confusion (sometimes debilitating) Occasional panting / shortness of breath Anxiety and paranoia Persecution complex Restless legs Tachycardia and palpitations Sleep disturbances Debilitating intermittent ankle pain Aches in every joint and muscle Muscle stiffness Mouth ulcers Dry eyes Cold extremities Poor circulation Pins and needles Pain in calf muscles when walking more than 200 yards Total hair loss on lower legs Constipation / diarrhoea Blood in stools Pale complexion Moon face While there are a lot of conditions and symptoms it's the neuropsychiatric issues that have become completely debilitating, to the extent that I've been admitted to a psychiatric hospital 5 times and have not responded to any of the 20 different psychiatric drugs that I've been prescribed. I had to work part time for 4 years until a year ago when I was forced to stop work entirely. I've always been sick since childhood but in the last 5 years it has become unbearable and has cost me everything. The strange thing is there were periods when every symptom has gone into complete remission simultaneously. Looking back this coincides completely with when I go on a low carb diet to lose weight, which I've done five times (the first for weight loss the next 4 to feel well). The same happened again when I went on FODMAP diagnostic diet to try and work out what was causing my gut issues after being told I didn't have coeliac following a negative gut biopsy. In January I started the Autoimmune Protocol diet to try and control the antibodies that had caused Hashimoto's and yet again every symptom disappeared within ten days! I'm currently in complete remission and feeling better than I have in 10 years - I've even gone back to work and my psychiatrist has said she will soon reverse my bipolar diagnosis. The only genuine commonality between the periods on a weight loss diet, FODMAP and the Autoimmune Protocol diet is that all of them are 100% gluten free. I am well enough to actually start researching what's wrong with me (when sick I can't read) and I am trying to establish if the above symptoms could be attributable to coeliac disease. I've read through a number of medical research papers that show that there is a link but these are rare so I would welcome some insight if anyone has experienced similar. I'd love to hear from you. Are there any tests I can ask for (DNA profiling for example)? I had a positive ANA screen (speckled pattern) but this tested negative a week ago since starting the diet and the FODMAP diet result indicated 'wheat sensitivity' diagnosis but nothing more. Due to the severity of my symptoms I will never again eat gluten so any blood test or biopsy will be negative. My doctors are sadly quite clueless.
  22. My Dr kept saying there was no check. So I decided to try gluten-free. Then they decided to do test and came back negative.i already have severe ibs swinging between diahrea for months as soon as eaten to not going 10 days, went lactose intolerant. I suddenly lost weight wearing children's clothes so was told to eat dairy. Within 2 year I gained 5 stone. Still struggling with health more issues adding I had underachieve thyroid. I been offered colostomy over 10 yr ago due to period bleeding from back but refused. Anyway rushed in hospital after not going 10 days admitted told had slow bowel n sent home after 2 days. Now struggling to pass last few month won't flush it smells stale it's about 10" circumference sometimes always long like snake hurts like **** like hedgehog with an attitude. I was recently told I'm calcium vitamin d defiecency and health now rapidly down hill. Lots other issues. Started aged 22 now I'm 52. Need answers. Some this is not in right lines but I have fibromyalgia n CFS plus facial pains due to jaw?? I have new Dr now should I ask for test ...oh and was healthy lost the 5 stone now gaining it back and once to twice day started eating cornflakes with weetabix plus toast.... sometimes my poop is long and thin too simple by it curls round like snake. Have acid reflux too. I also suffered syncope whilst on toilet many times in one sitting...
  23. 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,
  24. 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,
  25. Celiac.com 12/15/2016 - Celiac disease and irritable bowel syndrome (IBS) can have similar symptoms, and confusion between the two can often cause delays in diagnosis. International guidelines recommend screening IBS patients for celiac disease using serological testing. However, studies published recently have cast doubt on the utility of this. A team of researchers recently set out to assess the use of serological testing to screen IBS patients for celiac disease, and to update a previous meta-analysis of this issue. The research team included Andrew J Irvine, William D Chey and Alexander C Ford. They searched MEDLINE, EMBASE, and EMBASE Classic through May 2016, looking for studies that had recruited adults with IBS according to symptom-based criteria, physician's opinion, or questionnaire data. Tests for celiac disease included IgA-class antigliadin antibodies (AGA), endomysial antibodies (EMA), tissue transglutaminase antibodies (tTG), or duodenal biopsies following positive serology. They combined the proportion of individuals meeting criteria for IBS, and testing positive for celiac disease, to give a pooled prevalence for all studies, and they then compared between cases with IBS and, where reported, healthy controls without IBS, using an odds ratio (OR) with a 95% confidence interval (CI). They found a total of thirty-six eligible studies, and 15,256 participants, nearly sixty-one percent of whom met criteria for IBS. Pooled ORs for positive IgA AGAs, EMA and/or tTG, and biopsy-proven celiac disease in IBS subjects vs. controls were 3.21 (95% CI 1.55–6.65), 2.75 (95% CI 1.35–5.61), and 4.48 (95% CI 2.33–8.60), respectively. The authors wrote that there was "no increase in ORs for any test for celiac disease among cases with IBS in North American studies, and results were inconsistent in population-based studies." Rates of biopsy-proven celiac disease were substantially higher across all subtypes of IBS. Their review had a few limitations, including heterogeneity in some analyses, along with limited North American study data. Overall, people with symptoms suggestive of IBS had higher rates of positive celiac serology and biopsy-proven celiac disease than did healthy control subjects. However, the case for celiac disease screening for individuals with suspected IBS in North America is still unclear. Essentially, we need broader and more comprehensive study of this issue in North America. Source: The American Journal of Gastroenterology, 18 October 2016. doi:10.1038/ajg.2016.466