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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”