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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,
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I'm celiac for less than 3 months. I'm starting to get concern about getting all the necessary vitamins being gluten free. Recently my joint pain has increased, pulsating pain in my head, and sore areas in legs and neck have started recently. Or course, anxiety too. I'm currently taking a Centrum Men's Multivitamin. Here's what in it: Vitamin A 3,500 IU (29 % as Beta - Carotene) 70% Vitamin C 90mg 150% Vitamin D 1,000 IU 250% Vitamin E 45IU 150% Vitamin K 60mcg 75% Thiamin 1.2mg 80% Riboflavin 1.3mg 76% Niacin 16mg 80% Vitamin B6 2mg 100% Folic Acid 200 mcg 50% Vitamin B 126mcg 100% Biotin 40mcg 13% Pantothenic Acid 15mg 150% Calcium 210mg 21% Iron 8 mg 44% Phosphorus 20 mg 2% Iodine 150mcg 100% Magnesium 100 mg 25% Zinc 11mg 73% Selenium 100mcg 143% Copper 0.9mg 45% Manganese 2.3mg 115% Chromium 35mcg 29% Molybdenum 50mcg 67% Chloride 72 mg 2% Potassium 80 mg 2% I really can't believe after being diagnoses that my doctor didn't get me a list of recommend supplements to include the vitamin deficiencies by not having gluten in my diet. Everyone has to do it on their own. I don't really want to avoid taking a bunch of pills in the morning if I can. But I'm concerned I'm not getting enough Magnesium and Iron. Other too? Any recommendations of supplements to increase what I'm currently taking. Or just on supplement that includes everything I need? Thx.
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Celiac.com 09/08/2010 - Children with celiac disease face high risks for bone disease without supplemental vitamins, according to a recent study by scientists at the Canada's University of Alberta. The study shows that without certain crucial vitamins, children with celiac disease face a greater risk for weak bones and osteoporosis. For the study, the research team evaluated 43 children and teens from three to 18 years of age with clinically proven celiac disease. They found that the children commonly showed low bone density, most likely from poor intake and absorption of vitamins and minerals. According to the results, the children with celiac disease got less than half of their recommended daily intake of Vitamin K. They also showed low Vitamin D levels, which can be normalized by eating fortified dairy products by regular sun exposure. That means kids with celiac disease need more of bone-promoting vitamins such as K and D as part of their regular nutrition, says Diana Mager who is professor of agricultural, food and nutritional science, and co-leader the research team together with Justine Turner, pediatric gastroenterologist in the Department of Pediatrics at the U of A. "Children with celiac disease are at risk for poor bone health, but by adding vitamins K and D to their diets, it can help reduce the risk of fractures and osteoporosis," Mager said. Mager also recommends that children with celiac disease get outside as part of their regular play activity to build bone strength and boost Vitamin D levels. "Enjoying activities such as walking and running outdoors when there is more sunshine is a great way to contribute to healthy bones," Mager said. Source: University of Alberta
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Hi again, dear world. This is my second blog post. In the meanwhile I have had a really busy time testing new theories about my undiagnosed disease. Here is what has happened: In the end of November I visited my GP, and got a referral to visit a gastroentrologist in February. At that time I was so sure that I had Hashimoto thyroiditis, and two months of waiting seemed a long time, especially because I was so sure that this horrible brain fog could be maganged with a simple hormone intake. Why I was so certain I had Hashimoto was because I had had some mysterious days when all my brain fog and tiredness went away, this could last for 6-20 hours. Within that time I could eat whatever I wanted (although I haven't risked trying gluten) however much I wanted without starting of symptoms (normally every food has it's max allowed quantity and following long recovery period). And I had this unfillable hunger, was over-energetic, and often I couldn't sleep for the whole night. Resembles HYPO->hyper->HYPOthyroidism, where the hyper period happens rarely (year 2014 only 5 times total). For many months I'd tried to induce these hyper-periods, but with very little succes. I noticed that if they happened, then usually right after my body had gone through some kind of stress. Drinking 1l milk, 300g honey. Then riding a bike for 2 hours, feel really bad. Then eating rice, my heartrate goes to 90 (higher than usual when digesting), and got brain fog and tiredness. And then, after 2 hours, voila, I get 16 hours of clear mind and unsatisfiable hunger. Drinking 1l milk. Then right away running very fast for 45 minutes. Then rest for 2 hours, then eat buckwheat flour. Again, 90 ppm. And voila - 14 hours of energeticness. Drinking 1l yoghurt. 4 hours of foggyness. Then 6 hours of hunger and brightness. Did an experiment - eat 500 grams of the same rice withing these 6 hours. Nothing happened (normally I get more disturbing brain fog after eating 200g). 200g cocoa powder, following really foggy evening-night, then the next day - very little fog, energetic. Sometimes it also happens when I have diarrhea. And always after having fever. Sometimes also for a shorter period after feeling very tired after eating, then taking a nap, and the following meal is fog free. So you see, it would seem like sometimes the stressful events cause some kind of fever-like reaction, that first feels very bad, but then especially good (like the disease has been fought off with great struggle). Stressful event presses the deteriorated thyroid to do its job in an emergency situation (bad feeling), and then with a last struggle it releases an exceptionally big amount of hormones (following over-energetic feeling). Plus: I also have painless/feverless throat inflammation (at least 3 years). Due to lack of fever/pain and the time it has been stayed (completely unchanged) it can't be viral/bacterial. My throat feels tight Seldomly there is radiating pain around thorat (in throat, cheek and ear regions) No knee-jerk reflex (symptom of 1.hypothyroidism / 2.anemia / 3.spinal cord dysfunction) So, yesterday I gave a blood test, checked for TPO antibodies, TSH, T3, and T4 levels. All were in very normal range, meaning NOT thyroid problem. I really had hoped for 2 months that this test would finally reveal what's wrong with me, but again, disappointment. Later I did some background research and I found out that none of my 4 brothers-sisters and also my both parents had no knee-reflex, thus it is hereditary (and probably harmless). And my mother also has throat inflammation (pharyngitis), and she doesn't have hypothyroidism. Mysteriously each symptom my mother has fits into hypothyroidism profile (and she has ~80% of those symptoms) but the tests show negative, so I hope if I finally get diagnosed it will also shed light to her mysterious case. In the meanwhile I also tested all vitamins+most of (bio)minerals that there exists (figured if I have a celiac then vitamin deficiency may cause some symptoms). At first it seemed some of them worked (B6, B9, D, and Cr), but later experiments proved me wrong, again! Then i figured I haven't tried HCl (low stomach acid + SIBO would explain the immune reaction I get - undigested food enters bowels, immune system doesn't like it and attacks). Again, in the beginning it seemed to help a litlle bit, but later when I took 15x larger amounts (7.5mg Betaine HCl), it made a very little difference. And when I think about it, it doesn't affect my digestion even when I drink like 1l of water right after having a meal, so it really can't be HCl deficiency. (Stevie and Jordan say it also has to have pepsin in it, mine didn't have. But I really doubt it would make any difference in my case, because pepsin can't function in low-acid/watery environment.) Fortunately I did discover one thing that helps me a bit - caffeine. When I tried black coffee it a while ago, then it induced a horrible fog. Little less worse with different teas. But now I got a Herbalife tea, that has some kind of raw coffee and tea powder in it, and it works much better - it actually helps me digest. So, I purchased caffeine pills, and it confirmed my results. Unfortunately they have quite strong side effects - mild diarrhea, urination pain, stomach gases and little pain in stomach. I will try to find some other raw coffee pulber that would not have these side effects. What the effect could be from: Caffeine reduces inflammation and innate immunity. Maybe it reduces inflammation in my stomach and tells my immune system not to develop a reaction to the foods I eat often. Differentials: Caffeine activates blood flow + stimulates nervous system. Maybe the nervous system/muscles in my bowel isn't active enough (don't get enough blood), actually the nonfunctioning nerve-gut axis is linked to Irritable Bowel Syndrome. Studies have also showed that caffeine stimulates thyroid. - Now ruled out in my case. So, I'm waiting my first appointment with a new gastroenterologist in February (last one was 5 years ago). I will tell her everything I have tried in these 5 years, it will rule out a lot of conditions. And this time I won't let myself be diagnosed with "Irritable Bowel Syndrome" without doing colonoscopy and possibly endoscopy to rule out Inflammatory Bowel Diseases or non-healing bowel damage from celiac disease. I am going to defeat this disease, and when I do, I will do everything to help science eradicate the incurable diseases/better diagnose them and give people choices they have no control over.
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Celiac.com 04/15/2009 - A recent clinical study has shown B vitamins to be beneficial for celiac sufferers following gluten-free diets. Vitamin deficiency and less than optimal health are common problems for people with celiac disease, even those who faithfully follow a gluten-free diet. Common problems associated with long-term celiac disease include general malaise, and less than optimal well-being. To better understand the benefits of supplemental doses of B vitamins for patients with celia disease, a team of researchers recently set out to evaluate the biochemical and clinical effects of B vitamin supplements in adults with long-term celiac disease. The research was made up of doctors C. Hallert, M. Svensson, J. Tholstrup, and B. Hultberg. The team assembled a group of 65 adults with celiac disease for a double-blind placebo-controlled clinical trial. 61% of the group was female, and each had followed a gluten-free diet for several years. For 6 months, patients received daily doses of either a placebo, or of B vitamins in the amount of 0.8 mg folic acid, 0.5 mg cyanocobalamin and 3 mg pyridoxine. At the end of the trial period, doctors gauged vitamin effectiveness by measuring psychological general well-being (PGWB), together with total levels of plasma total homocysteine (tHcy), a reliable indicator of B vitamin status. In all, 57 of the 61 enrolled patients completed the trial (88%). Baseline tHcy levels for these patients averaged 11.7 micromoles/L (range = 7.4 to 23.0), which was markedly higher than the 10.2 micromoles/L for the control group (range = 6.7 to 22.6) (P < 0.01). After the B vitamin treatment, patient tHcy levels dropped an average of 34% (P < 0.001). Patients experienced substantial improvement in well-being (P < 0.01). Even patients who initially reported poor well-being showed notable improvements in Anxiety (P < 0.05) and Depressed Mood (P < 0.05) . These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients. Aliment Pharmacol Ther. 2009 Apr 15;29(8):811-6.
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