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  1. 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.
  2. Why did I call this post “Time for a Vitamin Reformation”? I see this a lot. So I wanted to write more about it. I share/write these posterboy blog post’s so that others might not have to suffer the same things’ I have. As always I hope you find it helpful to learn how/what someone else did to help their own selves in this journey/road we all walk/or have walked on as a Celiac Disease/NCGS patient. I know this post is way too long (again) as usual but I had a lot of ground to cover. So hang on if you can and will and if you have an interest in learning how I became the posterboy for Celiac and Pellagra. Learn from my mistakes! Quoting the Celiac and now Pellagra Posterboy “No man is so dumb as the man/woman who won’t learn from other people’s mistakes.” I have made too many (mistakes) to count. Take as much honey (knowledge) as you can from my mistakes so bad (lack of knowledge) health will not sting your quality of life. Is it any wonder God’s promised’ land was described as a land flowing with milk and honey? Where knowledge (truth) flows there is health of mind and body. Truth of the right diagnosis can free us from the error of a wrong diagnosis. SADLY! Few listen. But some (Pellagrins’) who have received a Celiac diagnosis co-morbid have heard (listened to) the good news that Pellagra is reversible (when it is mimicking Celiac disease in a clinical setting) and have gotten better. Don’t be the Last! Tell others! So again Why did I call this post “Time for a Vitamin Reformation”? Most people (in the US anyway if you are reading this in some other country) are aware of the Protestant Reformation but most people are not as aware of the Catholic Reformation. Where basically the Catholic’s got smart? If you will and said all these Protestant’s are writing books (fresh off the invention of Gutenberg’s printing press (the internet of their day)) and the Catholic church said let us start printing our own books about how great the Catholic church is plus some minor changes essentially stopped the reformation in it’s tracks. And today there is still 1 Billion (with a Bee Catholics in this world. (I am not against either by the way) this is only by the way of illustration. I had recently wrote a blog post about this why Supplementation wins the War but I wanted to take another stab at it again. And even though I will have only used Vitamin(s) in this post. I want it to be clear this is for Vitamins and Minerals . . . like Iron, Magnesium, Calcium etc. It is just easier to type/write colloquially to use Vitamins to stand in for both Vitamins and Minerals together. See any of my comments or Ennis_Tx’s about Magnesium taken as Magnesium Citrate or Magnesium Glycinate. And why it is easy for the Protestant’s to claim a victory of sorts (there are Protestants still right) it is a pyrrhic victory at best because according to answers.com Catholics outnumber Protestant’s 2 to 1. https://answers.yahoo.com/question/index?qid=20070213184757AAHuhGz If you don’t still don’t believe me visit some of the old Cathedral’s of Europe you guessed it nearly all of them are Catholic Cathedral’s. Back to our point about Vitamins needing a Reformation. Such is the reign of Genetics today we blame it (our Genes) for everything today. Yet new research indicates maybe less than 1/3 of cancer’s day has anything to with Genetics at all. http://www.foxnews.com/health/2015/01/02/study-concludes-that-many-cancers-caused-by-bad-luck-in-cell-division.html Why this research is old it highlights my point that lifestyle (nutrition/vitamins etc) can and do help prevent Cancer today even in this GENETIC age we live in. http://www.cbsnews.com/news/lifestyle-changes-can-prevent-40-of-cancers-study/ To quote them from cbsnews “”We didn’t expect to find that eating fruit and vegetables (VItamin rich foods my words) would prove to be so important in protecting men against cancer,” Parkin said in the statement. … “This adds to the now overwhelmingly strong evidence that our cancer risk is affected by our lifestyles,” Dr Rachel Thompson, deputy head of science for the World Cancer Research Fund, told The Guardian. “ We hope this study helps to raise awareness of the fact that cancer (sickness) is not simply a question of fate (it’s in our genes my words) and that people can make changes today that can reduce their risk of developing cancer in the future.” My point is we need to be saying. Nutrition (Vitamins’ make us healthy) and not let Genetics get all the credit these day’s this includes our GI health too! I believe. It is actually probably more true too realize/say the balance is 50/50 because stress/environment effect both our health and yes even Genes. I think of it in these terms. A Vitamin is a substance we need in a “Min”ium” amount without which we become sick. I understand completely there is a lot of confusion about this topic. I will provide you some of the sources that lead/helped me come to my conclusions. Dr Prousky’s research is what I based my conclusion’s on and helped me to realize my Celiac Disease with/where he concluded “Niacin treats digestive problems” could also be confused for Low Stomach Acid. http://www.yourhealthbase.com/database/a124b.htm This is the link to the abstract. I realized this was going to be a future post when I saw Ennis_Tx muse about this question in a previous thread. Digestion is a north south process and it begins to make much more sense when you begin to understand the stomach protects your Small Intestine and if your defense are low (low stomach acid) when it is commonly thought to be high invading proteins like lactose, soy, and gluten etc. get through. http://divinehealthfromtheinsideout.com/2012/03/digestion-101/ Try a low carb (i.e. and also gluten free) diet for about a month and see if you flare ups don’t improve I think you will find your trigger is gluten and carbs. If so this will work but you will have to come to this conclusion on your own. It took me 3 years of study to understand these things God being my help. 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. If you are now taking an acid reducer/proton pump inhibitor (I can’t lie) there will be a transition period. They all have a wall effect (burning when stopped) that often lock people in to using them for years and years when they were only intended to be used for 6 weeks or less to let ulcer’s heal. Actually on the OTC kind people usually buy without a prescription. It is even less than that. Only 14 days is recommended. . . . not 14 months ++ as is so often the case for people when they begin an acid reducer. See the FDA box warning. https://www.fda.gov/drugs/drugsafety/ucm245011.htm It will take courage and conviction on your part to take a Vitamin when all you hear these days’ that the “average” person doesn’t need a Vitamin. (see link below about why all the hate for Celiac’ drug/medicine treatment?/ trials?) by Jefferson Adams which inspired my title. https://www.celiac.com/articles/24099/1/Why-All-the-Hate-for-Celiac-Disease-Drug-Treatments/Page1.html Or put another way why ‘all the hate” for Vitamins? these days” instead of “Time for a Vitamin Reformation” (though I believe it is. .. I am also convenienced) it will take another generation to realize Pellagra is now being diagnosed as Celiac disease today instead. It takes a generation to make a change unless there is Education. This posterboy blog post is about that education process/the things I have learned from studying this subject myself. Do not change any of your supplementation/medical regime unless you have consulted with a doctor. . . but I found it helped me. The ignorance of this fact that Pellagra can occur with/in/as part of a Celiac diagnosis is so strong that so much so the “average joe” won’t take a Vitamin for their health? Well an IBS/NGCS patient/ Celiac Patient is not the average patient. They are known to develop malabsorption syndromes and B Vitamins are known to help celiac patient’s why wouldn’t you at least try a B-Vitamin or B-Complex to see if could help your GI symptom’s. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html (though this study does not include the effects of full spectrum B-complex) it would have been nice if it did. I ask again “Who’s Afraid of a B Vitamin” See my earlier posterboy blog post about this topic Or to ask it rhetorically why all the hate for Vitamins these day (reader)? Or you (reader) afraid of a Vitamin? Or have you been too (reader) taught to hate Vitamins? And it isn’t just Niacinamide by the way (which is the focus of this post) it is most B-Vitamins. See this article about how B-1 Thiamine can help reverse Kidney Damage in Type 2 Diabetes http://news.bbc.co.uk/2/hi/health/7796073.stm Entitled “Thiamine ‘reverses Kidney Damage’ in Type 2 Diabetes” As usual this research is almost 10 years old and doctor’s clinical practices have not caught on to this fact proven by research. Instead the standard reply is “you don’t need Vitamins” or at least the average person does not. People who have TD2 or Celiac disease should not be considered the average person. Let me say at this point. Why is this not on the front page of every newspaper in the US and the UK and the world. Here we have a Vitamin that reversed Kidney Damage but no one is talking about it. What is not considered or well understood that these same vitamins that can help these patients – a deficiency in these same vitamins can also cause these same symptom’s. http://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/ Now back to Niacinamide for a few minutes. What if had a Vitamin that was known to treat GI problems? We do but clinical practice has not yet again caught up with the research. That is why Prousky’s research is so ground breaking and misunderstood because the same vitamin (commonly misunderstood) associated with these problems has been proven to help the same problems it (Vitamin B3) has been thought to cause … though not commonly (well) understood Niacin treats digestive problems. http://www.yourhealthbase.com/database/a124b.htm *****I must say at this point this is not medical advice only my experience with Niacinmaide See my previous posterboy blog post about how the average clinical delay is 17 years in implementing new research into doctor’s protocols’/treatment regimens. This clinical gap is a devastating delay. And also I want to make this disclaimer. The default (thought) here is you are not taking Niacin or any version of B-3 (in its many forms) or have either not taken it for Cholesterol management previously or are now taking it for your GI problems. If you are now taking Niacinamide/Niacin etc. this post does/is not directed at you (or other Vitamins/Minerals) for that matter . . . like Magnesium or Iron etc. Also see my posterblog post about how supplementing can help you fight a two front war. Any Vitamin or Mineral can be taken to excess . . . contributing to a worsening of your conditon.. . including Niacinamide, Iron, Calcium etc. This comment/thread is directed to those who have not yet considered supplementation previously. And with the intent you will only take this for a cycle of time. Say 4 to 6months for most people or 6 to 12 months max for the most severe forms of this disease. See this link where it explains how “up to 12 months” B-Vitamins helps improved/improves moods for those who are depressed. https://www.ncbi.nlm.nih.gov/pubmed/7477807 Reader, Do some of the research of I have listed here and if you still feel the same way. I get it. I have been on that same journey. But this is not as uncommon or unplausible as it might sound. The “House TV” show/medical drama noted this fact in their episode on Celiac Disease. Google House season 2 episode 22 on Celiac disease entilted “Forever” and you will find articles about it and probably a link to watch it. I think it would be enlightening to see how these two diseases are entangled like Siamese twins. When digestion works properly the God given burp is produced (not soda’s) but you burp like a healthy child at 6 months of age so too will an adult when they take Niacinamide (the nonflushing form of Vitamin B-3) for 6 months 2/day (especially if you are not taking PPIs currently). Your results might be different but you won’t know unless you try it. When I began my journey I was/became known as the posterboy for Celiac disease. What it has turned into unexpectedly is me being/becoming the posterboy for Pellagra too! It (Pellagra in Celiac’s) is not as rare as people think it is today especially 2ndary Pellagra caused by your original Celiac diagnosis since Vitamin absorption is frequently compromised in Celiac’s. I always have to say. **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. But I have found (and my friends have found) if you take it (Niacinamide) like an antibiotic (UNTIL BURPING) then 95% of your GI stress will be in remission. And I don’t mean twenty minutes after you have eaten but 2+ hours later when burping has replaced burping and bloating that start’s almost as soon as you take you first bite. Or burping that occurs with drinking soda or a carbonated drink. Again I say 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” I hope this is helpful. Posterboy by the Grace of God, That is all for now until the next post. (Whenever that is) but the intent of this/theses post’s is “Too Educate” and anyone of my posterboy blog posts could help you without the need to read all my posterboy blog posts??? So I am sorry if I run a little long some times. . . but people need to know if this is the only blog post they read. . . Pellagra in Celiac’s can be successfully treated with supplementation or AKA a Vitamin Reformation (in the way we think) about GI problems according to Prousky who almost 17 years ago proved Niacinamide can help those with low stomach acid misdiagnosed. Will you listen? and take the Niacinamide Challenge taking it until you are burping 2 hours after you finish a meal. This usually takes 3 to 4 months taken it 3/day or morning and evening and (one hour before) bedtime (if it is not convenient to bring to work) works well for most people. This tends to be one 300 count bottle for most people. Though a smaller amount might work I want you to have a positive experience and thus recommend conservatively a 3 month to 4 month cycle – the amount your body can typically store in your liver – thus helping to reset your body’s stress clock (my words). This schedule works well for Magnesium as well. . . and usually it (Magnesium Citrate/Glycinate) causes restful dreaming in the first month of taking it. The power to change is in your hand for “To Educate is to Free” As always remember **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. But I have found (and friends have found) if you take it (Niacinamide) like an antibiotic (UNTIL BURPING) then 95% of your GI stress will be in remission. It is time for a Vitamin Reformation (a change in the way we think about Vitamins – a shift in our paradigm) praise bee to God! Back to when in the 20th century they understood Vitamins make us healthy! They even gave Nobel Prizes for discovering these substances called Vitamin(s) and rightly so! If this is the case for you – you the reader also have/had developed 2ndary Pellagra due to your primary diagnosis of Celiac disease. See my earlier posterboy blog post where I talked about my experience of developing Pellagra 2ndarly to my Celiac diagnosis. All those who have ears to hear may they listen! Feel free to read all my posterboy blog post’s if this pique’s your curiosity/interest but there is only so much in a/one blog post than can be explained but it really Is not necessary or visit the website/blog in my profile where I have told the same story hundreds of time that ONE fellow sufferer like myself may/might be helped by the same wisdom, I found God being my help, when I learned Pellagra and Celiac disease are Siamese twins and separating one (supplementing one to death) will kill the other (cause the other to go into remission). Also see my posterboy blog post of how I supplemented Pellagra to death/into remission. Noted above (earlier) in this post but provided here again for easy reference. And I believe you can too! Praise bee to God! 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them (fellow sufferer) which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” Posterboy by the Grace of God, 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. As always it is in this spirit of truth that I share so that others like my-self might not have to suffer the same things I did.
  3. Medical Mysteries and Shadowlands the Posterboys Story of how he unlocked help co-morbid Pellagra God being his help from his Celiac diagnosis. May you find the same faith in your life for to Educate is to truly Free! How to determine if it is a complementary or competing diagnosis? It takes faith to free yourself from a comorbidity. Health is like faith . . . you will only do what you believe. And you can have only faith in what you know to do. As some long time members of celiac.com know most/many of my blog posts’ document my trials and tribulations with Low Stomach Acid often being misdiagnosed as high stomach acid today). I have like many of you on this board had severe GI symptom’s culminating in a Celiac diagnosis after 30+ years of IBS and/or NCGS symptom’s. Only to find out that taking BetaineHCL (powdered stomach acid) helped alleviate many of my symptoms’. **** Let me say that this does not negate my positive Celiac/NCGS (really positive blood test only) diagnosis. I am in the medical world something termed a “Zebra” or “idiopathic” would be a more correct term/diagnosis. These GI conditions were happening for an “unknown reason” . . . Low stomach acid being misdiagnosed as HIGH stomach acid instead. Think the “House” TV show which I don’t get to see much anymore but commonly took several “differential diagnosis’s” to determine the correct one. While any of the previous diagnosis had a valid conclusion they ultimately were wrong. (But in TV land . . . . everybody finally gets the right diagnosis and gets better as if my magic it seems) but if you have ever read the Washington post’s “Medical Mysteries” column you know that is far, far from the real world sometimes. https://www.washingtonpost.com/national/health-science/a-bad-diagnosis/2015/08/24/b17606c2-12ac-11e5-89f3-61410da94eb1_story.html Often we/us “‘Zebras” exist in some “shadow land” as described well in this NYtime times article here discussing the difference between “The Damage of Bile Reflux not (Stomach) Acid” http://www.nytimes.com/2009/06/30/health/30brod.html quoting “The symptoms are similar to heartburn, and many sufferers are told they have gastroesophageal reflux disease, known as acid reflux. Yet treatment with popular remedies for acid reflux, like the acid-suppressing proton-pump inhibitors Prilosec, Prevacid and Nexium, fails to work or gives only partial relief. That’s because acid reflux is, at most, only part of the problem. The main culprit is bile reflux, a back-up of digestive fluid that is supposed to remain in the small intestine, where it aids the digestion of fats.” However if low stomach acid continues to be treated like HIGH stomach acid instead . . . no real progress is made and people become locked into a (bad) misdiagnosis. I have been that person. I know what it is like to receive one bad diagnosis after another. Co-morbidity is a real medical condition where more than one disease exists in a person and because of “preconceived notions” one disease is not being treated because the other “Primary” disease is considered secondary to the first. See my blog post about how this “devastating delay” can delay healing in recognizing the correct morbidity. Or can we identify the real/correct diagnosis in the first place. Maybe? Or Maybe Not? I am not saying this will help “All” your problems but it will help your co-morbidity. My co-morbidity was Pellagra occurring with/because of my Primary NCGS/Celiac diagnosis or as I said in another blog post I had Celiac disease and developed Pellagra. Or was it I had Pellagra and was diagnosed as a Celiac? How could I know for sure? I could supplement with the missing ingredient that leads to Pellagra in time. And if I got better then I had addressed a common co-morbidity in celiac disease. See my blog post where I explain how to win this two front war. I have found (digestive) peace praise be to God! Now I don’t’ expect this to work for everyone who try’s it but I didn’t anticipate the amount of resistance or faith it would take for people to consider a valid “differential diagnosis” either. It turns out without faith . . . people can’t get better. I will say it again “Health is like faith . . . you can only do what you believe”. What do I mean by that? Read most any post from Ennis_Tx and he will faithfully tell you about Magnesium. . . though few believe him (often) he faithfully tells it (because it helped him). I didn’t know what was happening at the time. I was witnessing the Pike Syndrome in action . . .until it happened to me. I naively believed . . . tell other’s and they will believe. Not so young padawan . . . you can have the knowledge to help other’s but until they know how much you care . . . they don’t care how much you know. I had come up against the greatest force in the (medical) world)) and maybe the world in general (I speak as a man) . . . inertia/apathy also called “learned helplessness”. Better known as the “Pike Syndrome” (Anybody who has received a misdiagnosis . . .. later on to find out your IBS is now NCGS or your NCGS is now Celiac disease this post is for you. Think if you had received a Celiac diagnosis in the beginning how much suffering you could of avoided over all these years.) Explained well here at a motivational coaches site https://jcrowcoaching.com/2012/02/01/that-pike-experiment-is-downright-chilling/ I will quote short pieces/clips to explain quickly what I mean but read it all for your selves for a more comprehensive understanding of this concept. “Known as the Pike Syndrome, it’s a great, albeit depressing, example of learned helplessness. There’s a pike in a tank of water along with a dozen doomed minnows. Sure enough, the pike darts and snaps and gorges. Poof, the minnows are nowhere to be found and the pike is pretty satisfied. Enter these two exceptionally perky researchers who proceed to lower a glass barrier into the tank and slip in another dozen minnows. Like any self-respecting pike, this fish is thinking “lunch,” and goes after them with gusto. Except he smacks his nose against the glass and comes up empty-handed (so to speak). Again. And again. Finally, the pike sinks to the bottom of the tank, suspends himself in the water and stops trying. That’s when these researchers (and really, they’re so happy they’re scary) remove the glass barrier, freeing the minnows to swim wherever they like. And where they like includes all around the motionless pike, right in front of his nose, even bumping into his head. And the pike? He just sits there and never again tries to eat a minnow. And he starves.” To many times in life there are “invisible barriers” in our lives’ holding us back. . . This is to those who have lost hope or are still searching (hopefully) if you are reading this blog post for yourself or a friend who has developed NCGS or Celiac disease. Gluten is your minnow (with good reason) but if you have Pellagra too (that invisible barrier) can be removed by supplementation. IF your now suffering from Celiac and Pellagra the way I was then taking Niacinamide will remove the Pellagra barrier in your GI quest to get better and find GI peace from Pellagra for yourself the way I have. How do we know if it really can be Pellagra instead? It is as simple as Occam’s Razor. From Wikipedia 1. “Occam's razor is a problem-solving principle attributed to William of Ockham (c. 1287–1347), who was an English Franciscan friar and scholastic philosopher and theologian. The principle can be interpreted as stating Among competing hypotheses, the one with the fewest assumptions should be selected.” The correct diagnosis is the simplest one to diagnose. Pellagra can be simply treated by supplementation. AND (a witness of two is true) IF you have developed a CORN allergy in addition to your gluten allergy you have met the medical definition of Pellagra 75+ years ago lost now to medical history. See Dr. Heaneys’ great blog post summarizing this fact about Pellagra and the 4 Ds. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ I will say it again “The correct diagnosis is the simplest to diagnosis”/simplest to treat in a co-morbid condition. . . where there is some doubt as to the true diagnosis. And supplementation removes that barrier if indeed you have also developed a corn allergy I beg you to consider taking Niacinamide 2 or 3/day (whichever is easier/ with each meal or morning and evening) for 6months to see if your GI problems don’t improve the way mine did after 30+ years of suffering from a Vitamin deficiency. Or if you are still suffering from a “poor prognosis” and poor dietary compliance (seemingly) though you have tried your best (you really have) and are still failing at achieving remission then consider the differential diagnosis of Pellagra is all I ask. Also see this thread about a Celiac starfish/zebra who is suffering still from Pellagra misdiagnosed as Celiac disease (I believe) and is shocked her Ttg levels are still elevated. quoting/paraphrasing from the earlier Pike Syndrome article christina this post is for you. “The thing is, unlike that starving pike, we have the power to change our perspectives, challenge the accuracy of our beliefs, and question our views. It’s not necessarily easy. Sometimes it takes an outsider to help . . . .who will push and prod and challenge. If we’re lucky something inside of us nudges at our unconscious until we move, and try, and change our views”… /belief(s) about our/your bad diagnosis. You will only know if you try! I pray you will have the faith to try! If it could help why wouldn’t you at least try? You are not a Pike! As always 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Remember **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your regimen Change is not easy . . especially if you have developed/are suffering from the Pike Syndrome I grant . . . but possible with education for with education comes understanding. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (Pike/sufferer still suffering), by the comfort wherewith we ourselves are comforted of God.” Posterboy by the grace of God, *****Note: I have said all I have intended to say. I speak as a man. Badly misquoting Romans 10:14 How then shall they change their stars/diagnosis in what they have not believed/heard? and how shall they believe in what they have not heard? and how shall they hear without a preacher? Romans 10:14 "How then shall they call on him in whom they have not believed? and how shall they believe in him of whom they have not heard? and how shall they hear without a preacher?" I have spoken/preached to other’s still suffering with/about a diagnosis I did not receive that helped me. I hope it helps you too the way it did me. Pellagra – Like Celiac Disease has existed in the Shadowlands as a Medical Mystery for way too long! Find out which is the correct diagnosis is by supplementing with Niacinamide 3/day for 6 months I beg of you until BURPING two hours after a meal is your new normal and the “Natural Order of Things” have been restored. If this has "Piked" your interest you can read best how to take Niacinamide by reading this blog post. You are not a Pike! You can decide for yourself. Knowledge is power! Now that you know what else Celiac Disease could be what will you do with this knowledge? Will you sink to the bottom of the tank or try to bust through that glass barrier (which isn’t there) but in your mind if Pellagra is now being diagnosed as Celiac disease and the doctors have badly misdiagnosed this Medical Mystery (Pellagra) and you have been found to exist in the Shadowlands of Medicine. Then there is hope! This is not as far off as it might sound on a first hearing. See Season 2 Episode 22 “Forever” listed as episode 44 see link below of the medical TV drama “House” the “Differential Diagnosis” /Final Diagnosis was Pellagra for the Episode on Celiac Disease. https://en.wikipedia.org/wiki/House_(season_2) Feel free to comment and add your success stories when you begin burping w/o bloating for the first time in years and years so others too can be helped from your experience. Like I am sharing now. Praise bee to God if you have considered what I said and are willing to try it (taking Niacinamide) for yourself or your little pike if you are a parent and still searching for answer's for your little one until . . . burping is their/your new normal. I only know it helped me. I can't be the only one. If I am let it not be because I did not share! A witness of of two is true! Both you and your tyke take it (Niacinamide) at the same rate/amount 2/day or 3/day (whichever is easiest) and you will begin burping together -- a confirming sign that the Vitamin is making a difference and Pellagra is fading away into medical history for you in approx. 3 months. 2: 7 “Consider what I say; and the Lord give thee understanding in all things”
  4. Hello everyone! I am a new member, but have been lurking for a few days. I received my diagnosis about a week ago between Christmas and New Years. I am both relieved and anxious about the diagnosis. Happy to know what is making me sick, but it is a lot to take in! SO MANY QUESTIONS!!! Well, seems like I found the right place to ask those questions. To skip my personal story about being repetitively misdiagnosed before receiving a proper diagnosis, scroll to the end of my story for the questions. I just wanted to share my experience. -------------------------------------------------------------------------------------------------------------- So, here is where I want to begin. Here is my story, questions attached: In my experience, I have been sick since I was a small child. I became anorexic at age 8, not for vanity, but because I simply felt better when I didn't eat. Then I became more sick and was diagnosed with hypothyroid disease. I started eating 'normal' again while taking synthetic thyroid hormones and then my weight ballooned into my early teens. Then my same doctor that diagnosed me with hypothyroid disease took me off the synthetic thyroid medications when blood work returned with results showing that I no longer had hypothyroid disease.... weeiiiird. Then it happened again off and on, not two, not three, but four times throughout highschool. Thyroid problems came and went. I then developed cystic nodules all over my body and was put through more than one round of accutane. The cysts would disappear after 8 or so months on accutane, I would come off the accutane, be clear for a week or two, then... BLAM! Covered in cysts again! Little did I know, hypothyroidism and cysts were symptoms... it gets a little more weird. So, into my college years, I had a body full of scars, cysts, thyroid problems, SEVERE fatigue, inability to focus, and sudden complications with my kidneys. It soon became normal to be in pain, not remember anything/fuzzy memory, and have blood in my urine. (my grades dropped at this time - straight A's to D's and a few F's Parents were angry and didn't listen when I gave them my reasoning.. I felt like s$#&aki mushroom). Doctors put me on kidney medications and then accutane. I became anorexic again. The symptoms cleared and I felt good again... for a few months (I wasn't eating after all). I mean, my skin was clear... not a single cyst OR pimple! I could breathe better AND I had energy. I was even making straight A's again!!! Then it occured to me that I may have food allergies. So I saw an allergist and was then diagnosed with food allergies: dairy, wheat, ginger, and sweet potato. (And THEN my mom decided to tell me that she was hospitalized while pregnant with me for consuming dairy!) angry face, fist shake. I began eating well. The pain would sometimes happen and the cysts returned... but they no longer covered my entire body. I would have maybe eight cysts on my back and 5 or 6 on my face at a time. I wasn't complaining... it was the best I had felt in years. Even if I did have a few off days! My parents still believe my drop in grades having nother to do with my health... I'm serious... I study hard and never party...blah blah blah. I'll save THAT (parental reaction and grades) for another topic. Then I had a few episodes... so severe... I ended up in the ER several times this past semester. (grades: managed to do okay, but nothing spectacular). The doctors told me that I not only had debri in my kidneys, but I may be developing more severe problems as well.... possibly might develop kidney disease. I was placed at high risk. :( I got to where I started drinking a gallon of water a day, no tea, no soda, no coffee, etc. I felt better as a result but still had severe pain. I would have a hard time walking between classes and even doubled over on the sidewalk a few times because it felt as though someone had shoved a few knives into my gut and they were twisting them in many different directions at once. I saw the school doctor and disability office and they e-mailed my teachers as a result. I was allowed a few extra minutes to get to my classes. Which, believe me, I needed! There is a strict attendence policy at my university where 3 tardies/lates = 1 absence and 3 absences = 1 drop in a letter grade. Sometimes I would be on time, sometimes 5 minutes late, every time in pain. I just couldn't live like this anymore! So I went to the same doctor I had been seeing as a child over the break. She told me that she was going to have two separate blood tests done and not to eat for 24 hours before my appointment. I followed orders and came in. She drew blood, labeled it, and then handed me some rye bread to eat. An hour later, she drew more blood. Two weeks later, I came in to hear that I had low amounts of IgA and IgG antibodies in the first blood test, but in the second blood test... the amounts were HIGH. So, after a few more tests, the results are in. I have celiac disease. I am so RELIEVED. After a LIFETIME of health complications, I have an answer. I know I have only been gluten free for a few days (I am avoiding my allergens too), but I am looking forward to becoming healthy and having energy again! ------------------------------------------------------------------------------------------------------------------------- Here is my question for you guys! Before being diagnosed with celiac disease, were you diagnosed and treated for other things that were actually related to/tied to celiac disease? If so, what was your misdiagnosis? How did you feel to finally know that you had celiac disease?
  5. I am an emerging professional distance runner and have suffered from all of the celiac symptoms in the book. I have also had hypothyroidism for about 12 years and have had to increase my dose after every visit due to malabsorption. My symptoms started about 3 years ago when I started running and were almost unbearable, and I have also been suffering from anemia. I only became aware of celiac disease after another runner suffering from the same symptoms was diagnosed. Not knowing much about it, I skipped the blood tests and went straight to the GI. The nurse practioner said it sounded like classic celiac and had no problem getting me in for the endoscopy. When I went in for the procedure, the official "doctor" asked me what my problems were. I told him that I am convinced I had celiac disease, and his reply was, "you don't have celiac." This really concerned me, but I was already hooked up to the IV and prepped. When I called for my results, they said that they were negative, but they found some redness and chronic inflammation that was from gastritis. They said I should come back in for a follow-up and think about getting a colonoscopy. Completely unconvinced and frustrated, I asked to see the results for myself. They sent me the actual pictures from the biopsy, and I spent hours comparing them to other biopsies of people with celiac disease. Clearly, I am not a doctor, but my biopsies looked identical to other biopsies with a celiac disease diagnosis! The vili are definitely blunted and much shorter than they should be. I self-diagnosed myself with celiac disease and went gluten-free for what's been 4 months now. I started feeling almost 100% better after about a month, but now I am having some other problems that are representing a hyperthyroid. I feel that my gut is able to absorb my synthroid much better now, that I am actually overmedicated. This has now brought me back to the frustration of getting the proper diagnosis for celiac disease and seeing a doctor who actually knows about the connection between celiac disease and other autoimmune disorders such as Thyroiditis. I feel really helpless and am looking for some advice as to who I should see. I live in the San Diego area and would appreciate any feedback. Is it possible to just take my biopsy results to another doctor? Please help!
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