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  1. GFinDC, I agree sites that don't sell something are better are at least they should be but as kareng points out . . . they can be useful resources for plain english explanation to laymen. I do find most doctor's sites that recommend vitamins/minerals also sell them. You can take the wrong kind/form (non-bio-available) like Magnesium Oxide and get no benefit so I only use them as resource to find the best form available to my body. Magnesium Citrate ended my chronic fatigue but I know a lot of people who take the cheapest easiest available Magnesium oxide who show no benefit form which is sad because now they often now never consider Magnesium in the bio-available form citrate and/or glycinate that really helps our body to make energy. I am like you I never buy their vitamins but I do use their good information to confirm other research I did on the topic. That often can tell me where to look in the medical journals to see if what they say is true. Concerning what Dr. Myatt said (you can't cover everything in one page sometimes) and why my posts tend to be long (and I am a rambler) but what was left out for brevity (maybe not clarity) is called "gastric tolerance" the research of what is considered a safe dose when taking a supplement or medicine. See this link where the "gastric tolerance" of acetylsalicylic acid (ASA) also commonly known as Aspirin is being determined. Dr. Prousky talks about the theory of "gastric tolerance" and what it means when he researched "Is Vitamin B3 Dependency a Causal Factor in the Development of Hypochlorhydria and Achlorhydria?" at this link quoting Dr. Prousky from his paragraph on "The Treatment of Hypo- and Achlorhydria with HCl Supplements" that (Dr. Prousky "For the treatment of hypo- and achlorhydria, many clinicians have utilized HCl supplements (either betaine HCl or glutamic acid HCl with or without pepsin). This method requires the use of increasing doses of HCl supplements with meals until gastric tolerance is reached.65Gastric tolerance occurs when the patient experiences warmth or a slight burning sensation in the stomach. At this point, the patient would know the total dose of HCl supplements required per meal. Whenever gastric tolerance occurs, the patient would reduce the total dose by one. The patient would be instructed to use fewer capsules with smaller meals and the therapeutic dose (the dose below gastric tolerance) at larger meals." and I think would make more sense if Dr. Myatt had provided this background information on what it means to reach gastric tolerance. And why I leave it to doctor's to talk about taking BetaineHCL because it is easy to get burned (if you take a supplement wrong) and prefer to talk about Vitamins/Minerals which usually has a much safer profile with less risk. I have taken betaineHCL and experienced this gastric tolerance of a "warm feeling" but it was not intuitive. I had to play around with how many I took and prefer to take a vitamin if a vitamin like Niacinamide can do the same thing if Prousky's research is correct. I think taking betaineHCL is much more risky than taking a water soluble vitamins is. B-Vitamins by their nature are water soluble and one would have to take them for at least 3 to 4 months even at high doses to get too much to usually harm someone. and even then at high doses 3 or 4 times a day because in 3 to 4 hours your body usually pisses (passes through the kidney's) out any extra you have taken. If you have ever taken B-2 Riboflavin you have noticed this effect of bright neon colored urine that stops when you stop taking Riboflavin. The yellow color is your kidney's bypassing the extra B-2. As for a more medical jargon source ( of which I am not) but do a lot of nutrition research because I find it is best to know as much as you can before you take any thing either a vitamin or medicine from a doctor. See this link that talks about the "Effect of gastrointestinal disorders in autoimmune thyroid diseases" And have excellent summarizes of how often both hypothyroid and hyperthyroid problems occur in Celiac disease. I tried to copy the Celiac disease paragraph and thyroid disorders but couldn't get the formatting to work properly. Read it yourself they are very thorough as you would expect any good medical journal to be but I can't say it is an easy read. Remember **** This is not medical advice and should not be considered such. But I have found if it helps me it usually will help someone else too. And you could do a lot worse than take B vitamins. But I do think it is best too test first so that your own personal doctor can help recover from your deficiency and just as importantly document it. So others can be helped from your experience. by documenting it I mean test first for your deficiency before taking a vitamin if a good test is available. some tests are harder to come by than others. Vitamin D tests are now fairly routine but are not part of a normal blood test. you have to ask for the doctor's to check it (Vitamin D) for you. I don't think my doctor can do it but once or twice a year without a medical reason (if you have been diagnosed with Celiac) as an example and he want's to check your Vitamin D levels... at least he did mine and found them low but never checked again . . . an a few years later I found I was low again. It think someone else complained about this on this board/forum. They treat then follow up but don't always check back up to see if you are maintaining your levels. You have to be your own advocate. I hope this is helpful. posterboy, dysfunction. diagnoses ©
  2. gigdeb, It is amazing how many things line up when you first discover you have developed Celiac disease after all these years. Some of the same things associated with Celiac disease are also associated with having low stomach/poor gastric function. And Graves disease is an associated disease of having poor stomach function. Strong stomach acid helps us absorb our Vitamin and Minerals that we use to regulate our organs. Look into Iodine if you having goiter problems. Selenium is also helpful for Thyroid problems. Functional Medicine doctor's get that nutrients (vitamins and minerals) are necessary to help our body function correctly. 1/3 of will have a thyroid problem in our life's and when I was first diagnosed as a celiac I was starting to have thyroid problems. It has since got better. Both Iodine and Selenium helped restore my body's function. Having a thyroid associated disease you might enjoy reading this article about doctor's whom struggled to diagnose someone with a thyroid condition in the Nytimes. Sometimes it as simple as taking our temperature and why historically a doctor's visit would always check your body temperature when people come in for an office visit. But I find my doctor doesn't always do that anymore. Dr. Chris Kresser has a free ebook on thyroid problems. I don't know if it would help you are not but you can't beat free as they say. Here is the link to his thyroid page. He also has some great information on low stomach acid and GERD and about "what everybody ought to know about heartburn but doesn't" series of articles. I just wish more people gave vitamin/minerals more of a chance these days. See this link to part I of the series Where he says talking about heartburn/GERD "Curing a disease means eliminating its cause. When a disease is cured, the symptoms don’t return once the treatment is removed. This of course is not the case with drugs for heartburn and GERD. As soon as the patient stops taking them, the symptoms return. And often they’re worse than they were before the patient started the drug." noting like most Functional Medicine doctor's "a symptom is not a cause" and why I believe taking Selenium and Iodine helped my thyroid problem. The symptom (thyroid problems) was not the cause of my problems but my low minerals related to my my celiac disease. And why I think both Iodine and Selenium helped my thyroid. Good luck on your journey and thanks for sharing. I hope this is helpful. posterboy,
  3. artsunshine, We are glad to help if we can. I have had your legs cramps before. Taking Magnesium CITRATE 200mg 3 to 4 a day (at least 2 hours between doses) will get rid of most people's leg cramps. posterboy,
  4. coolclimates, I don't know if this will help you are not. I once did research for someone at work who was having constant nose bleeds and why dry weather can make it worse all my research lead me to believe low Vitamin C was the problem. See this link that summarizes some of the things that contribute to low vitamin C levels. Stress is common before a Celiac diagnosis often and it is possible that the stress of life like PTSD might of contributed to either causing/aggravating or making your flare ups worse. Here is the link as reported on that reports these findings. There is also a thread in the forum that discusses "Major Stressors as a Factor" in Celiac disease that you might find interesting to read. Linked here It has a nice link provided by Ennis_Tx that notes how low iron levels and Vitamin B-6 might contribute to panic attacks. Provided here for your convenience. It might be worth checking out if you are having PTSD. *** this is not medical advice just what I have learned from researching nutrition and somethings I've learned from reading other posts on this board/forum. good luck on your journey. I hope this is helpful. posterboy,
  5. Ariel90, Take the amino acid Lysine. I have had them several times. Lysine always got rid of them for me. If you are prone to have them often Lysine can be used prophylactically (as a preventive). 500mg once a day usually keep them from coming back. I don't usually get them now unless I am feeling sick and they break out ahead of a flu or some kind of sickness or stress I am going through. Taken 1000mg a couple times a day usually causes them to go away in 3 to 4 days. Can be taken 1000mg 3 to 4 day if needed to get rid of mouth ulcers. To speed healing swilling your mouth with salt water and spitting it out can accelerate healing of the sores. I only used the salt water when my mouth was watering from many sores at once especially if one was on my tongue. Salt water and Lysine can be used together if quicker relief is needed than the Lysine alone can provide. Otherwise 2 to 3g of Lysine a day in divided doses was all that was needed to get rid of them. I hope this is helpful. posterboy,
  6. kkgirl, This is a two part answer I say you had asked in another thread about decreased folds. cycyclinglady commented that duodenal folds where a sign of possible "silent" celiac (my term) before villious atrophy showed up. don't trust dr. google for a dignosis but it can be helpful to guide you in the right direction. So i was curious what did medical journals say about decreased folding and there it was in two or three journals and it wasn't recent research either. This research is 15 or 20 years old and we still wait on villious atrophy for a "biopsy proven" diagnosis. I sight this source because it mentions different things that does not cause reduced villi height or or affect folds. Lactose does not cause it nor do parasites. It seem to be closely related to gluten. there is a an even earlier citation from the New England Journal of Medicine. With decreased folds the villi is being affected. But now that you have a positive antibody test you know now that . . .. but gluten just hasn't destroyed the villi yet. I wouldn't wait till it does. You say you responded well to a gluten free diet why chance it. as for the mouth uclers I've had this happen several times and almost none since I went 100% gluten free if you will take the amino acid lysine in a about a week of less of taking lysine your sores will go into remission. It is known as oral thrush. If you can stand it. using salt water (though it will sting horribly for a few minutes) it can help healing of the sores. swill it around your mouth. Don't drink it and spit it out can help the healing process. I used to have them so bad my mouth would drool with salivia trying to soothe my aching mouth and eating can be horrible especially if it (sore) is in a sensitive point on the tongue. But lysine always got rid of it 1000mg two or three times daily and 3or 4 days they went away. I hope this is helpful. posterboy,
  7. artsunshine, Let me add to what GFinDC said. The cancer concern usually is only for those who continue to eat gluten. You will find there will be good days and bad days when you are cross contaminated but you will learn quickly in which food "hidden gluten" lays. You will become an expert label reader. Fortunately now it easier than it once was now that things have a gluten free label. I actually considered it a blessing. Most autoimmune disorders we don't know the "trigger" for Celac you do. I would joke at least gluten/bread was something I didn't really enjoy like tomatoes or cheese etc. If you know what to avoid you can do it. A lot of people become more sensitive to gluten after about 6 months to a year. At a year things I had eaten though I didn't realize it at the time had gluten like meats so I went to whole meat hot dogs. Flours are included to extend the product and it is cheaper than meat so you get thinks like modified food starch in them. You find there will be many learning experiences along the way. but this board will be here to answer any questions you might have. There is a poster on this board who was told he had IBS and 10 or 12 years later he has now found he has or really (had) or now does have celiac disease. You have an early start on getting better because you got your diagnosis so soon. Education/awareness is a wonderful thing. It is wonderful time to be a celiac but count yourself lucky.. . . . you can't control cancer by going gluten free but you can a celiac diagnosis. posterboy,
  8. kareng, Your are probably right. But the same could be said about Celiac disease 15 or 20 years ago. Rare enough to not be diagnosed nearly as common as it is is today. Thanks to education doctor's now know to look for it today. Sadly though often patients often still have to educate our physician's Celiac is a lot more common than it is diagnosed. In any good diagnosis there is a qualified differential diagnosis process. You have heartburn ok? Is it IBS that is the cause. One poster on this site said had IBS for 10 or 12 years now he has Celiac disease. 10 or 12 years ago they didn't know to look for Celiac maybe with a IBS diagnosis. And it may be Pellagra is 10 to 12 years behind Celiac disease in the awareness it (celiac/gluten) thankfully now deserves and receives. Dr. Heaney summarizes why this is so very well why doctor's don't even look for Pellagra today. Quoting "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." If the International Journal of Celiac disease notes it then it is probably worth at least considering it as part of a reputable diagnosis though it is not today as Dr. Heaney notes. see this link again quoting from the article "3. Pellagra and celiac disease The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]." It is me again. If we all want to help the people and each other on this board then I would be remiss not to mention that Pellagra and Celiac Disease or celiac disease as it is commonly known can/do occur together. I say that kareng to say this. as I said in previous post. I am in a medical no man's land. You do not have to be. I have taken Niacinamide as I noted and shown clinical improvement but admit I might be in a silent phase of the disease. I will never know and can not know if I was one of the possible 58% of pellagrins who might be being diagnosed as Celiac's instead. but you kareng can go to your doctor's and like me and maybe others like when I/was first diagnosed doctor "please test for celiac disease" and how I received my board name. The nurse saying well you are "Posterboy" for Celiac in our office. "How did you know you could of had celiac disease?" Research. I could of had IBS or UC or Chron's if the test was not done and so I am medically because their is no other valid diagnosis today. I didn't know I had celiac disease but I suspected through research I could have. And medical science agreed. Now 10 years later medical science is now finding Pellagra in Celiac's. I am naive enough to believe if one celiac could have pellagra undiagnosed other might could too. That is all am trying to do is to educate. So that set me off again. I know I will never know for a certainty whether my co-morbid pellagra is/was causing my celiac symptom's but you can/could test to see if you or others on this site could have pellagra too. We all fumble the ball forward. And I admit I have kareng. I know I had poor gastric function. Many on this site do and take or have taken betaineHCL to help with that poor function. But it always felt like a symptom to me and not the cause. Many have flare up on this site when stress is higher and that made sense to me. Since celiac disease is a genetic disease I had to look elsewhere if indeed my environment/stress was causing my GI symptom's to get worse. and now I find where in medical journals the same conclusions have been made not only is it possible for celiac and pellagra to occur together in the same person they do so at a surprising staggering rate in 58% of celiac. What does this look like in human beings? If one is critically low in Niacin(amide) the 3 D’s of Pellagra (Dementias, Dermatitis’s, and Digestive Issues) show up. Which to me make the best sense if I also had pellagra some of my celiac symptom's got better or at least stopped complicated my celiac symptom's. I know I am rambling but I am trying to get to the point that the Merck Manual has a simple test for Pellagra.,-dependency,-and-toxicity/niacin The Merck manual is commonly used as desk reference for physicians and it could be accomplished as given a urine sample the next time your at your doctor's or your specialist. I am always trying to learn as much as I can and especially if it can help people/others or myself and this is what I learned since my last post. I did not even know you test for a Niacin deficiency/pellagra and with the doctor's not even looking for it today you will have to bring it up the way some (I would dare say) most have brought up or potential Celiac diagnosis to our doctor's when we first received or diagnosis. Quoting from the Merck Manual when doctor's are considering whether a Pellagra diagnosis is warranted. "A favorable response to treatment with niacin can usually confirm it. If available, laboratory testing can help confirm the diagnosis, particularly when the diagnosis is otherwise unclear. Urinary excretion of N1-methylnicotinamide (NMN) is decreased; < 0.8 mg/day (< 5.8 mcmol/day) suggests a niacin deficiency." but the doctor has be looking for it to find it the same way with celiac disease 15 or 20 years ago. They would not find it in me now I don't believe because quoting the Merck Manual again my "A favorable response to treatment with niacin(amide) can usually confirm it." But unless you or anyone reading this forum/thread still suffering 5 or 10 years later still struggling with good control or are super sensitive to gluten doesn't think about or bring it up with their doctor's (like I didn't know to do) then the chance for it to be documented in the medical record is lost. The other case report of celiac and pellagra notes the same thing. Linked here again where they say "Although B3 vitamin and tryptophan dosage were not performed, the diagnosis of pellagra complicating celiac disease was retained." and the other article says the same thing. But without the test for pellagra my experience is anecdotal the same way me and knitty kitty reported better control from itching. IF we don't test we don't know. It doesn't mean treating pellagra would help your celiac disease but it does mean you have a better chance for improvement because having both complicates your celiac disease. kareng, I agree a new post needs to be started. It has drifted off topic. But I wanted to respond because you did. Perhaps as an alternative diagnosis thread or differential diagnosis thread could be started about this topic. 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. I wish us all good luck on finding a solution that works for us all. posterboy,
  9. cycylinglady, I don't know where that leaves me. There is no good medical answer. My chart says I am a celiac but my GI symptom's seem to be in remission. Maybe I am now a silent celiac and damage is being done that I don't see or is now occurring in other organs that I am not aware of. I might be in a "honeymoon" period and it will soon end but what I think happened was I might of been a Celiac who developed Pellagra. As Knitty Kitty said in another thread. the best research I can find on the topic is in the International Journal of Celiac disease. Link provided In their opening of the first Celiac and Pellaga case study they note "The first description of celiac disease associated with dilated cardiomyopathy and pellagra in the same person, brings multiple interesting aspects to discuss." And this one The best I can gather from the articles unless a test for either a Niacin deficiency or tryptophan was done at the time of diagnosis for my celiac diagnosis it is hard to prove both diseases occurred in the same person. they say "Although B3 vitamin and tryptophan dosage were not performed, the diagnosis of pellagra complicating celiac disease was retained." So I think I am in that boat. No test for a Niacin deficiency were performed since Pellagra apparently is rarer than a Celiac diagnosis no thought was done to review my blood work for a possible Niacin deficiency. If I had Pellagra there really is no good way to prove it. Not now at least now that I have taken Niacinamide like I did. Back to where that leaves me. In a medical no man's land. It is interesting is all I know that like the International Journal of Celiac disease notes "brings multiple interesting aspects to discuss" and where better to discuss them than at/in a forum. Posterboy,
  10. emma6, Yes thank you. Ooooooooooooooooooooops! of course I did not know her license had been suspended. I will be sure not to quote her again. It seems the more I try the worse it gets. Would you take a link from Pubmed that note a similar link of the possible connection betwen "Niacin metabolism and Parkinson's disease." Or the Michael J Fox Foundation studying this same relationship. They say the same thing and presumably by doctor's who don't sell vitamins or have had their license suspended. Again thanks emma6 I will try and be more careful when siting individual doctor's and their practices. I just find in somebody's own words easier to follow than some scientific jargon often found in medical journals. Posterboy,
  11. ravenwoodglass, I am not sure exactly what you mean by the "psychological aspects" of a Celiac. I mean it to mean any of many related "dementia's" including depression, anxiety, MS, ALS, Cerebral Palsy or ataxia's linked or suspected to be linked to gluten consumption or a Celiac diagnosis. 40% of Celiac's go on to develop Depression. I understand 50% of both Cerebral Palsy and MS patients have gluten antibodies at the time of diagnosis but none them listen or consider what they are eating can be causing their "psychological aspect" or even believe gluten can cause ataxia. The brain blogger is a great site to read about all things Neurologic in Nature. They have an article that summarize any link if any to gluten consumption entitled Celiac and ALS is their link. Link provided here. Quoting their summary Celiac disease and ALS "In two case reports described a few years ago, patients with neurological symptoms and MRI scans showing white matter lesions in the brain were initially diagnosed with the progressive motor neuron disease amyotrophic lateral sclerosis (ALS). Upon further analysis, the patients were found to actually have celiac disease mimicking ALS. In both cases, the neurological symptoms of ALS improved with a strict gluten-free diet. A study recently published in JAMA Neurology aimed to further explore this link between celiac disease and ALS by searching for gluten-sensitivity markers in an ALS clinical population. Gadoth and colleagues scanned a number of antibodies in the blood of these patients and found that 15.3% of the patients with ALS were seropositive for transglutaminase 6 antibodies, compared with only 4.3% of the controls. The patients that were seropositive for transglutaminase 6 showed a classic picture of ALS, similar to that of seronegative patients. Tissue transglutaminase 6 is primarily expressed in the brain. Gluten-associated ataxia had already been linked to the presence of serum transglutaminase 6 antibodies; these had been reported to be present in 62% of patients with gluten ataxia. Other studies had also found transglutaminase 6 antibodies associated with gluten neuropathy, as well as with schizophrenia and cerebral palsy. Aiming at further establishing a link between ALS symptoms and celiac disease, the authors assessed the genetic profile of the ALS patients to determine if their carried the HLA genetic variants associated with celiac disease. They found that 86.4% of patients who were seropositive for transglutaminase 6 autoantibodies also carried celiac disease susceptibility HLA variants. They thereby established a direct link between celiac disease and ALS symptoms in this group of patients. The data from this study strengthens the hypothesis that ALS may be associated with autoimmunity and gluten sensitivity, at least in a subset of patients with celiac disease. Although there is still need to further study and confirm this link, these results are important in the sense that gluten sensitivity is easily treatable; ALS symptoms in this subset of patients could therefore also potentially be reverted – a gluten-free diet could do the trick." It is me again. My point was with Dr. Ford he thinks it originates there (in the brain). I don't think think that is the case. As the Brainblogger points out the Tg6 Antibodies is the "dementia" antibody. And eating gluten free helped my depression symptom's. As well as taking other nutrients I had been low in because of my Celiac diagnosis. Zinc helped my anxiety. Magnesium Citrate is very good for issues related to the mind. But Niacinamide is "magic" when it comes to the "dementia's" that can develop when eating gluten. Dr. David Williams summarizes it well his article entitled "The one memory boosting nutrient you should be taking. Linked here What is unique about this article is we might hope that Niacinamide could help the "dementia's" of a Celiac diagnosis like Alzheimer's mentioned in this article (on mice) it not only helped those showing Alzheimer's traits but improved the mind/memory function of "normal" healthy mice. Quoting "At the end of the study, the diseased mice that were treated with niacinamide performed just as well in memory tests as healthy mice. The niacinamide not only protected their brains from further memory loss, it also restored lost memory function. If this wasn’t exciting enough, niacinamide also improved memory and behavior in the mice without Alzheimer’s. " I know we are not mice. Be they are often used as in early stages of drug trials to see if if drugs are safe for human consumption. but this was not a drug but a Vitamin that helped boost memory. The same vitamin Knitty Kitty said helped her with the brain fog she was having. Dr. Myhill in the UK gets it. Vitamins can make us healthy and Niacinamide especially can help us more than most doctor's today realize. See this link that lists some of the things Niacinamide helps with and I link it because she notes 3 or4 different "neurological" or i.e, dementia related conditions as I would say taking Niacinamide can help. As I said to start this post "ataxia" or whatever you want to call it i.e, Psychological aspects, neurological, depression or things like Schizophrenia etc 50+ years was treated with Vitamins. Because they still believed in Vitamins then. Even Parkinson disease today has shown a link to low vitamin levels. Though you probably couldn't get anyone to take it (Niacinamide) at a high enough dose often enough to make a difference. These are doctor's I quoted who still have trouble getting people to take Vitamins because you hear all the time. "A normal healthy person doesn't need a Vitamin" and yet a Vitamin D deficiency is common in the adult population. but don't take a vitamin for your health. All I know taking Vitamins (Folic Acid, Vitamin D) and and Minerals (Magnesium, Zinc) and yes Niacinamide helped me. I only list this as an example of things that might benefit you if our are a Celiac who is known to be low in Vitamins/Minerals. The way I see I am just a boy walking down the beach throwing back starfish. see the poem by Loren Eisely linked here or my blog where I talk about how I have tried to make a difference with education. I am just trying to make a difference for those that will listen. 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 wish us all good health soon. Posterboy,
  12. squirmingitch, I owe you an apology. I never meant to misrepresent what you said. When I read "I thought the first sign of a glutening with me would be a flare of the rash but it wasn't. Mine begins with the neurological aspects, then GI symptoms" . . . I miss understood what you were saying. I should of noted only my depression and excessive anxiety associated with my celiac diagnosis. Many times I would wake up on the wrong side of the bed and it often was when I had a heavy gluten meal the night before never associating the two until I was diagnosed as a Celiac and not until I began my gluten free life did my depression symptom's improve. Dr. Ford's focus is on the gluten ataxia (psychological aspects) of eating gluten and the only doctor who thinks a gluten allergy begins in the brain and not the GI tract (that I am aware of) which is unique. I know I certainly had pyschosomatic reactions to eating gluten and I am sorry if I projected these onto you. I am truly sorry if I misrepresented what you said in anyway. I quoted you out of context instead of quoting the whole thread and I apologize. Posterboy,
  13. Cyclinglady, I was serology confirmed as a Celiac. It is true I was not "biospy proven" but there are others on this site like Gemini and I think Ironictruth who were only blood test confirmed but we are no less Celiac's. Than those who have had a biopsy proven diagnosis I believe. we had a gluten antibody response while consuming gluten and our antibodies when down when I/we stopped consuming gluten. I think Gemini said hers are still slowly coming down. And why this considered controversial by some . . . the ideal that biopsy is required for a "positive" not false positive indication of celiac disease is beginning to take hold among research and experts in the field. A noted author and I would say expert Dr. Rodney Ford of New Zealand the author of the "Gluten Syndrome" notes like squirmingitch that he believes celiac is actually a "Neurological disease" just as squirmingitch noted she had "neurologic aspects" and "psychosomatic reactions" and is what Dr. Ford says. I have had these same reaction of clinical depression I believe tied to my gluten consumption in addition the GI symptom's and most doctor's today don't connect the two diseases in these aspects. but my "gluten brain fog" got better when I went gluten free but most doctor's won't agree they are connected even to this day. Dr. Ford summarizes well what he calls the "Unmasking of Celiac" as reported in the Journal of Gluten Sensitivity. Link provided here Please read the whole article for yourself but my point is the same as his. quoting dr. ford "What an odd thing to say: “Do not mask the appearance of celiac disease.” Inferring that you keep on eating gluten, despite early signs of celiac disease, until you get enough damage to your intestines that it can be seen under a microscope. I (He) totally disagree with this concept—but this is still a common belief of medical practitioners. I am actually glad my doctor was educated enough about the topic to diagnose me as a Celiac without a biopsy. Dr. Ford goes on to say "Have you ever heard of a doctor “masking” the diagnosis of heart disease by failing to treat high blood pressure or high cholesterol until the patient has a heart attack? Ridiculous! Have you ever heard of a doctor “masking” the diagnosis of depression so that the person is suicidal before given help? Ridiculous!" He says! He admits it is contentious but I think it is high time we admit serology is enough to diagnose someone as a celiac before a biopsy can prove "well the blood test was right about you having celiac and not NCGI phase of the disease where a biopsy proves what the blood test told us" my words. Then dr. ford goes on to mention 12 different points about why only blood exams are rejected as proven celiac disease in the absence of a biopsy. I will note two or three points that I think as he terms it is a "smoking gun" for a serology proven diagnosis. Quoting Dr. ford 7) "The “masking” concept originated a few decades ago when biopsy was the only way to diagnose celiac disease;" According to Dr. Ford but 8) "now, the blood tests for celiac disease (EMA, tTG, DGP) are more accurate than the biopsy, and can turn positive BEFORE there is any histologic evidence of gut damage;" He capitalizes this fact but we still want people to use an archaic standard when no other method was available to "Prove" a celiac diagnosis. Dr. Ford goes on to note 1) "Celiac disease is a progressive condition—it slowly gets worse the longer you eat gluten;" 2)"In the early stages of celiac disease, it cannot be diagnosed by endoscopy biopsy;" 3) "The biopsy test is inaccurate and relies on experts to recognize early disease;" So I think it is high time like my doctor does and more enlightened researchers/practitioner's like Dr. ford and demand serology confirm a celiac diagnosis and stop demanding older more unreliable methods. He (Dr. Ford) notes summarizing quoting " "a) a Gluten challenge is detrimental to your health;" "b) A gluten challenge (to create serious bowel damage) can take years, during which time ongoing body damage (brain, skin and bowel) is ongoing;" Now it should be noted I am not saying this I am just quoting what an expert in the field says about a "biopsy proven" celiac diagnosis. Though I do agree with it because other dr's like dr. Mark Hyman said as much 5+ years ago in the Huffington Post quoting Dr. Hyman "Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease " Quoting Dr. Hyman again for emphasis "If your antibodies are elevated" . . . Positive is Positive according to Dr. Hyman and now the the noted author who was the first I know of to link neurological aspect i.e, gluten ataxia as a real component of the "gluten syndrome" Dr. Ford says blood serology is better quoting Dr. Ford again and "more accurate than the biopsy, and can turn positive BEFORE there is any histologic evidence of gut damage;" He Dr. Ford thinks and I agree this day can not come soon enough for the Celiac's still suffering waiting on a "biopsy proven" celiac diagnosis that "Biopsy is not the Gold Standard" and he even dedicates' a page of his practice to educate people of this fact. It is very informative and should be read by anyone who has a positive blood test for celiac disease. Here is the link IN summary he believes there will be quoting an "Ending of Endoscopy . .. to diagnose Celiac disease" "Ending of endoscopy In the next few years, blood tests (particularly the DGP tests) (Dr. Ford says) will take over the endoscopy and we will see the end of the endoscopy to diagnose celiac disease." I just hope it comes soon before more people have to "ridiculously" endure eating gluten sometimes for years according to what 5+ years ago dr. Hyman concluded a "positive (blood) test is positive" for a Celiac diagnosis. So please don't say I didn't have celiac disease. I had 30+ years of horrible GI problems from the time I was a very small kid. I developed Celiac disease no to mention the many IBS, constipation, diarrhea issues that go with such a diagnosis including early onset Arthritis in my late 20’s with a formal diagnosis in my early 30s by blood serology. I could not of survived as other on this site have said a "biopsy proven" celiac diagnosis. I will be glad when other get it. "Positive is Positive". I actually think I was as Knitty Kitty said on this site "I was/am a Celiac who developed Pellagra" and why I think Niacin helped her the way it did me. The International Journal of Celiac disease notes this possibility concerning being a Celiac and a Pellagra sufferer Co-Morbid. See this link Note what they say about Celiac and Pellagra being Co-Morbid in 58% of Celiac's in paragraph 3. Celiac and Pellagra. This is because it is not YET well understood that 58 percent of Celiac patients are Co-Morbid with Pellagra and it it might take years for people/doctor's to understand this. See this link where Dr. Haney's discusses why this is so. Where quoting Dr. Heaney he correctly states “it is doubtful today that most health professionals would not recognize it (Pellagra) if a case happened to come to their attention” Today! If you can believe the research in the International Journal of Celiac disease then "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!” in the majority of Celiac's quoting the Celiac Posterboy. And why I keep trying to educate people of this fact before more people sufferer unnecessarily. *** Remember as always this is not medical advice and should not be considered such. Always consult your doctor before making any changes to your medical regimen. But mine has taken/uses The Niacinamide Challenge /protocol in his practice and his patients digestive/GI problems are in remission i.e, they burp, their stool sinks and and they go once a day without distress after taking Niacin/Niacinamide 500mg 3/day for 6 months proving at least in the majority of his patients they are also Co-Morbid Pellagrins among his IBS patients at least and according to the International Journal of Celiac disease their is at least 50/50 chance a Celiac or/and I believe a Non-Celiac Gluten Sensitivity (NCGS) patient might be too or as cyclyinglady terms it talking about me Non-Celiac Gluten Intolerant - NCGI. Your results might vary. 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,
  14. squirmingitch, I usually mention the Niacinamide form of the Vitamin because it avoids the flushing people find annoying about the commonly available Niacin form used for cholesterol management. Knitty Kitty used the Niacin form to help her itching. You ran review how she took in the above thread or research the Niacin protocol to relieve itching by releasing our histamine stores in our body. You did not say how long or how often you Niacinamide before abandoning it. Most people don't take B-Vitamins long enough, frequent enough or in high enough doses to get the relief they seek. People make the same mistake with Magnesium. Often they say it is in my Multivitamin. Most multivitamins have 6 to 10 percent of the Magnesium one needs daily. To get the needed magnesium from a multivitamin would take 10 multivitamins a day. And then it is an oxide form not available to the body like Citrates which when people take it in that form notice a dramatic increase in energy. When I first took Magnesium it was in the wrong form. When I first took B-2 it was not in high enough dosages, frequent enough, long enough to make a noticeable difference. I had angular cheilitis as part of my celiac diagnosis and took both Zinc (which research said might help) and B-2 for a month which should of helped. Yet neither zinc or B-2 aka Riboflavin helped any. So a couple years past and after more research I realized it did not take multi-time's which is needed to keep serum levels up when taking B-Vitamins or long enough 3 to 4 months the time my liver could store the vitamin. And right on target of taking Riboflavin for 4 months 3/day my urine turned bright yellow/neon a sign my body was now bypassing in the kidneys (remember B-Vitamins are water soluble) Riboflavin a sign my body had over come it deficiency/dependency of B-2 and my angular cheilitis which I had struggled on and off for 10 years with went away and I have not had that problem now in over 5+ years. I was just suggesting if you didn't take it at 500mg 3/day for 4 to 6 months either Niacin or Niacinamide your choose) you may have not taking it long enough to notice a difference i.e, cause burping a sign the Niacin(amide) is helping your digestion and presumably your skin issues too since the Niacin form on this board had been used for the DH rash. I hope you find help soon with your itching. And when you do - share so other readers/contributors can benefit as well. Maybe if you try the Niacin form like Knitty Kitty did it will help the itching but the Niaicnamide form does not and will not help the initial itching caused by DH as you yourself know but other have successful used the Niacin form orally to relieve at least the initial itching of DH. I was trying to think more long term like my experience with Vitamin B-2 Riboflavin haven taken it once unsuccessfully but realizing my mistake thankfully took it again and got better so when I began taking Niacinamide I knew I would have to commit to taking it at least 3 to 4 months before I could judge if it was helping me. And why I tried to explain my experience with Vitamin B-3 and the form I used to help my GI problems. I think we are pretty good researchers on this board and try to research things out for our-self's. I didn't try Niacin(amide) until I read Dr. Prousky's work that said it should work but I knew if I didn't commit to it and try it myself I would never know. see this link for the abstract Like Knitty Kitty said quoting (me in parentheses) " I read a book "Niacin, the real story" by Drs. Hoffer, Saul, and Foster, (prousky's research) which advocates high doses. I started small and am increasing my dosage. I'm often sceptical of "cure-all," fad diet, latest health craze books, but this one confirms the research I did prior to stumbling across this book. I have experienced health improvement since beginning to take niacin. I can't express how big a difference niacin has made to me. Pellagra is scary. It progresses very subtlely. I strongly believe that the brain fog we suffer when glutened is due to a drop in niacin. Niacin is instrumental in breaking down and clearing gluten and histamine from our bodies." It was when I realized that I was not taking my B-Vitamins (or Magnesium as a Citrate) multiple times a day for multiple (3 to 4 months) months correctly that I vowed to see if Dr. Saul and Dr. Prousky was right. So maybe it won't help you the way it did us but it won't if you are not taking it correctly either. As is often the case when people take Magnesium as an oxide or B-2 like myself when I didn't take it multiple times a day for multiple months. If you don't take it (Vitamin B-3 Niacin) again I can understand why but if you do try it (Niacin 250mg or 500mg) the way Knitty Kitty did then I hope it helps you the same way it did her itching and me my GI cross contamination issues after taking it 4 to 6 months of taking it 2 to 3/daily. Good luck on your journey. Posterboy,
  15. squirmingitch, It may have not been the doxycycline. You didn't mention any more about your Niacinamide from your first post. Niacin on this board has been used to treat the itching effect of dh the celiac rash. You note despite usingy doxy you still continue to have flares but when you started the Niacinamide and doxy you noticed improvement from the itching. I think you got the wrong thing that was helping. Niacinamide is used in creams to help acne since it is the non-flushing form of the vitamin. Receutics skin cream available at Rite aide uses this in skin cream for dermatitis issues like acne. See this post where Knitty Kitty used Niacin orally to treat the itching of DH the celiac rash. Where I explain the two types of Niacin. Niacin that causes flushing and the Amide version of Niacin -- Niacinamide the active form in the body which does not. It is actually this conversion to Niacinamide in the body that causing the dilation of your capillaries. The treat/doctor yourself website explains this well. If it was the Niaicnamide there should be a cause and effect action of your itching/flaring of the rash getting better by taking the Niacinamide/Niacin as well. 250mg seems to be the ideal size. Because your body can absorb about that amount every 2 to 3 hours but it harder to find in that size. You can find Niacinamide readily at 500mg at the Vitamin shoppe 300 count size for $25 tax included. I know I have bought several bottles to give to people and their acne always gets better when they mix in their cream. It should also be taken orally so the rash doesn't come back (hopefully) for 3 to 4 months at least in divided doses. 3/day works for most people because remember being water soluble when low in a B-Vitamin it must be taken multiple times a day (twice or more) to keep your serum levels up until the body can restore its balance. Which happens to be about a 3 month supply in the liver. If you don't take it that long you will not get your desired control from the DH rash you are seeking. I took it 2/day for a year but have not taken it in 5 years because I have over came my deficiency. See my blog in my profile where I talk about my experience with Niacinamide and the website in my profile if you want to research this more yourself. Blog post linked here for easy reference. The Celiac Posterboy summarizes this research in hisis blog post about how skin problems of people who have a Niacinamide deficiency can be diagnosed as having the DH rash of Celiac disease. Also squirmingitch if you are sure it was not gluten that got maybe it was stress. Stress is common before a diagnosis and might explain why you have flared again. Has or had anything stressful happened to you in the 6 months prior to your flare up. I wrote a response to thread started by Csark and commented on by Ennix_Tx that talked about "Major Stressors as factor" Link provided here for easy reference where I note in the thread research as it appeared on that I am linking to that stress contributes to a celiac diagnosis and it makes sense it might contribute to your DH flare up. Stress makes us sicker than we often realize at the time. People often get high blood pressure then they are stressed but most people don't know Folic Acid can help with their blood pressure because we have become low in a B-Vitamin. Stressed has/does drain us of B-Vitamins which help us fight stress and another reason the Niacinamide could help your manage your DH flare. When taking Niacinamide it should be taken UNTIL burping is your "new normal". This will take a whole 300 count bottle and maybe a 2nd for good measure for the reasons I mentioned above. What do I mean by burping? This confuses some people sometimes. I don’t mean the little burp you get with drink some carbonated beverage or burp a little in the first 20 minutes after eating but also are bloated. But your new normal BURPING the natural order of things burping – The burp will come later after the meal the longer you take the vitamin. Burping will occur the more frequently the less you eat. Soon water will cause you to burp. When your stool begin sinking your body is digesting the carbs and proteins that were/can cause backwash (heartburn/GERD) before when you only burped a little and were bloated after eating only a few bites. And later IBS, Constipation and Diarrhea when they go through the system undigested tearing are insides upside down. Now BURPING will occur two hours after you ate something. Long after you have finished your meal you will burp if you have taken the Niacinamide 500mg 3/day for 3 to 4 months at a minimum. Then burping will be a sign the "natural order of things" that your stress/inflammation is under control. Kind of like gfindc says about farting I like to say a healthy child burps at 6 months of age a sign they can digest whole foods and a healthy adult should too! Think about it. Burping is a good thing when we stop and think about it. And that is a good thing when you know what it means. I hope this helps and if it does cause symptom relief of the DH then tell others just like others who read/comment on this board and try to help each other with their knowledge and experience. Or as the bible says concerning help when it comes. 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.” **** 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 doctor and friends have found) if you take it (Niacinamide 500mg) like an antibiotic (UNTIL BURPING) then 95% of your GI problems will flare up less and less. And probably your DH too if indeed it was the Niacinamide helping in the first place when you thought it was the doxycycline instead. 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,