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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Posterboy

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  1. Jmg, Here is a nice thread where Ennis_tx has posted many dairy free link/resources in case you have not read this thread yet. Also to answer your main question about Casein and as Awol noted about their being a difference about lactose and casein since lactose free cheese can still cause problems. See these livestrong links that summarizes the difference between lactose and casein and why it is usually the casein most people react too. https://www.livestrong.com/article/396733-types-of-casein-protein/ https://www.livestrong.com/article/412339-what-cheese-has-no-casein-or-lactose/ I would also review your medicine's. I had a bad reaction to my BP medicine Losartan causing my dairy allergy to resurface. after 6 weeks off it my villi seems to be able to tolerate dairy again. I hope this is helpful and I hope you find out what is causing you your dairy problems. A little testing should help you determine if it the casein or the lactose in the dairy is the problem. Lactaid can help with the lactose problem. Or as Awol noted try a lactose free cheese to see if dairy still bother's you . . . then it might the casein or check your medicine's as it was in my case causing my dairy problem. People do grow out of a dairy problem often. . . so don't give up on it entirely. Check back in 6 months and see if your villi have healed. Mine did. I had a terrible milk allergy as a kid but grew out of it in time. Thanks be to God. But do check your medicine (if you take any) their might be something else ( that have taken for granite is safe) that might be causing unknown villi blunting as the Losartan did/was causing in my cause . . . causing my dairy allergy to flare back up. ****this is not medical advice only my experience after recognizing my BP medicine Losartan had caused Villi blunting issues leading to my dairy allergy. I hope you find some of this information helpful and hang in there you can get better from a dairy allergy. I have from changing my medicine to a non-blunting medicine. posterboy,
  2. Exhaustion

    johnojohno, I have a couple links that might help you with your depression and one of them also will help you with your energy/sleep problems/chronic fatigue. Here is the one about B-Vitamins and depression entitled "supplementation after one year improves mood". https://www.ncbi.nlm.nih.gov/pubmed/7477807/ It should be noted that improvement was shown at three months though. Here is the one on Magnesium and the one that will help you the quickest and also will help your fatigue and sleep problems entitled "rapid recovery from depression using magnesium". https://www.ncbi.nlm.nih.gov/pubmed/16542786/ Both B-vitamins and Magnesium Glycinate work quicker when taken with each meal for 3 months then you can taper back to twice a day for the next 3 months. ***** this is not medical advice only my personal experience with taking Magnesium. Magnesium really helped my depression. It will also cause lucid dreams usually in the first couple of weeks after beginning and you will find your sleep is peaceful and you wake up rested. If you have charlie horses at night (waking you form sleep) magnesium should help this too. . .. I know it did mine. It is wonderful to not be fatigued these days. I know how you feel. Find it as a Magnesium Citrate or Magnesium Glycinate and your body will thank you for it with increased energy. As chlorophyll is to the plant so is Magnesium to the animal. For anxiety try some Zinc lozenges (the kind you buy for a cold) sublingually (under the tongue) your body self regulates the amount of Zinc you need by producing a sour/metallic tastes in our mouths. If the 2nd or 3rd lozenge becomes sour then spit it out you have enough zinc in your body. This should help a lot of the anxiety you are having. You might also have **** (stars) white specs in your nail bed if are low in Zinc as if you injured your fingernail . . . a classic sign of a zinc deficiency. I used to have them on my nails. Since taking Zinc (as a lozenge) they are now gone and so is my anxiety. ***again this is not medical advice only things that helped my depression and chronic fatigue over the years. I hope this is helpful. 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,
  3. celiac and pregnant?

    Ravenwood, KarenG, Cara in Boston, I was wrong to comment. I am sorry. I just identified with the italian research that seemed to explain my own experience as/of someone who had celiac disease (I believe undiagnosed) -- My mother. Unfortunately it (my diagnosis) came too late for my mother to do anything about it in her life. She was in her late 70's when I was first diagnosed and only lived about 5 years after receiving an early onset dementia diagnoses among other health problems. . . probably alzheimer's though it was never confirmed. My mom had many children before I came along God rest her soul and was the best woman I ever knew . . . I had no idea my birth was such a strain on her. Cara in Boston I do believe I inherited Celiac disease from my mom and that subsequent brothers and sisters before me triggered NCGS and/or Celiac undiagnosed for/in her. . . for she had constant GI problems. I do know both me and my brother (we were late children) have had GI problems all our lives. I shudder to think if I was born later if I wouldn't have been a "choice" and a not a life or possibly others would of counseled my mom to end her geriatric pregnancy. I am forever grateful she choose to have me. Jeremiah 1:5 Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee . .. Again I am sorry. truly the posterboy by the grace of God,
  4. celiac and pregnant?

    kareng, You are right. I haven't been pregnant but i thought the research might be beneficial to a professional researcher (if she didn't know it already) that there was specific research about this very topic. often I have wished I knew about things sooner than I found out about it from my doctor. and the research indicated the doctor's (often) were not aware of this possible connection/risk factor. And if the doctor's are not aware of it probably most patient's aren't either. And might explain the silence on the "advice received" from this thread because most haven't been informed of this possible connection especially by/in a 2nd pregnancy. I know I wasn't. I was just trying to be helpful. I do know heartburn is common in a pregnancy because three of my friends wife's are pregnant right now and their heartburn is rampant. I wouldn't want them to not be aware of this possible connection though I don't think they would listen unless it came from a doctor. posterboy,
  5. celiac and pregnant?

    ljgs, This is an interesting topic you have chosen to write about I hope you are able add to our understanding of this important topic. Stress has been shown to contribute/occur before a celaic diagnosis. here is the celiac.com article about this issue. https://www.celiac.com/articles/23506/1/Stress-Common-Before-Celiac-Diagnosis/Page1.html Pregnancy was considered a "negative event" in about 1 in 5 of those with pregnancies. Jane Anderson on the verywell site has a very good researched article about this summarizing the best study I have seen on this topic about "reproductive life disorders in italian celiac women" here is the link https://www.verywell.com/can-pregnancy-trigger-celiac-disease-562302 I will quote from a notable section of the article. "First Comes Baby, Then Comes Symptoms Most women are diagnosed with celiac disease after at least one pregnancy — in fact, a comprehensive Italian study published in 2010 on the reproductive effects of celiac found that 85.7% of women received their celiac diagnosis following their first pregnancy. But that statistic doesn't necessarily mean anything. Many women have their first baby in their 20s or early 30s, and celiac disease diagnosis tends to occur a little later in life — in your late 30s, 40s or even 50s and beyond. Delays in diagnosis (even in Italy, which tends to be more celiac-aware than some other countries) could mean the women in the study actually had celiac long before they learned they did. There's some evidence for this. Half of the celiac women in the study said they had experienced menstrual cycle disorders potentially linked to celiac disease before they experienced any other symptoms. And, women who eventually were diagnosed with celiac disease were twice as likely as other women to experience pregnancy complications, which also have been linked to celiac disease. Both of these issues could indicate the women potentially were suffering from early, undiagnosed celiac disease at the time of their first pregnancies, but they and their doctors didn't recognize the symptoms." Your writing instincts might be on to something. This research seems to indicate that indeed pregnancy could trigger a subsequent celiac diagnosis. quoting again for emphasis. "Most women are diagnosed with celiac disease after at least one pregnancy — in fact, a comprehensive Italian study published in 2010 on the reproductive effects of celiac found that 85.7% of women received their celiac diagnosis following their first pregnancy." They (the researchers) think this could mean "could indicate the women potentially were suffering from early, undiagnosed celiac disease at the time of their first pregnancies, but they and their doctors didn't recognize the symptoms" which is pretty par for the course when diagnosing celiac disease. Even with the many advances in diagnosing celiac today it regualarly missed for IBS or NCGS instead. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html It seems in most cases the IBS previously diagnosed or NCGS instead progresses to a full blown Celiac diagnosis after the pregnancy. If only doctor's knew of this association between pregnancy and subsequent celiac disease then maybe improved celiac diagnosis would result in better care for the mother. Much like people who have gestational diabetes are more prone to develop diabetes themselves. If pregnancy is considered a risk factor for celiac's then the doctor's could be on the look out for it and catch it sooner. Instead of the customary 8 to 10 years it often take to diagnosis many patients still today. I hope your magazine article end's up educating people of this new developing connection between a future celiac diagnosis and pregnancy as "a negative event" that can lead to a celiac diagnosis. Also you said you were a mother of a "young adult with celiac's" don't forget to have yourself checked for Celiac disease yourself. It does run in families. I hope this is helpful as always. 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,
  6. Chiropractor

    Ennis_Tx, I am just now seeing your blog post. Look into Vitamin K and Boron both are important for Calcium levels. Vitamin D gets all the press but bone density has shown to improve with Vitamin K levels. Here is a quick google search about born from the Livestrong site. https://www.livestrong.com/article/242015-foods-high-in-boron-vitamins/ Be careful to find a K2 or MK-4 or MK-7 form. K2 are fat soluble (usually from dairy or meat sources) and the MK's are the kind that stays/stored in the body. See this webmd article about why the form matters. https://blogs.webmd.com/integrative-medicine-wellness/2008/10/vitamin-k2-but-not-vitamin-k1-is-helpful-for-bone-density.html Just like Magnesium. The for you take it in matters. With you having trouble digesting meat it makes sense you would be low in Vitamin K though eggs are considered a fairly good alternative source of Vitamin K. I don't know whether it (K) is in the whites or the yolks though. You will have to do more research on that Ennis_tx. Here a good overview of the foods sources of the different kinds of Vitamin K and where (what type of food) determines what kind of Vitamin K you get in your diet. http://healthyeating.sfgate.com/foods-rich-vitamin-k2-1561.html **** this is not medical advice but I hope this is helpful. posterboy,
  7. Is Non-Celiac Gluten Sensitivity and/or Celiac disease really Pellagra in disguise in the 21st Century? Whether to supplement or to not supplement by the Posterboy What to say? What not to Say? So many things to cover. . . yet so little time/room for it in only one post. Let me be clear. I think it is or was in my case. That is I think one disease lead to the other. Your story might be similar. Which one to choose? Supplementation I think answers/answered that question (for me) at least. And I hope it will you too! In the work place we have a phenomenon called “Silos”. “That is not my job” is heard way too often. Instead of let me see if I can help you with that! Right? It would be called or known as good Customer Service if we were in business for ourselves to offer help. But not in medicine . . . it is stay off my territory/turf and an all-out war breaks out. But when it comes to diseases/symptom’s that are or can be “Differential Diagnosis” we have that same bunker mentality or “Silos” thinking. Talk to your friends who have NCGS or Celiac disease (and I have tried) and inevitably they will say . . . I do not have Celiac . . . I have IBS or I am not a Celiac (yet) I have NCGS instead. Or talk to a UC patient (stuck) in their Silo (diagnosis) or a Chron’s patient . . . and the lament is the same. I do not have that. It is almost a knee jerk reaction. “I can’t have that”. I know because I have tried diligently to educate my friends and many forum members on this board of how Pellagra makes more sense when you stop and ask seriously “What else”? can/could cause these/my symptom’s. I recommend this thread/post where other forum members staunchly defend their silos/bunkers. In it NCGS, SIBO and Pellagra sufferers battle to the proverbial death over their positions. Let me say at this point???? Who knows who is right? Captain NCGS could be right or SIBO girl could be right or all three could be right! But it is better to settle on one diagnosis (usually) and run with it so to speak. And each in turn have faithly done this and ran to their bunkers to get more fuel for the fight? (SIBO girl) I am sorry I don’t know the percentage for SIBO that becomes’ Celiac or Pellagra. But for IBS and NCGS the failure rate(s) are horrible. For weatherman we would be happy with 50/50 right? (though they are getting somewhat better these days) A good baseball player is said to be good when he bats .300 or better. He is doing good. Well in Celiac’s we are still well below that number. We are not doing good at catching Celiac or is it Pellagra early enough in the sub-clinical phase? where it could prevent the most harm! See this post where 90% of Celiac’s in Canada is missed or Misdiagnosed. https://www.celiac.com/articles/24919/1/Are-Doctors-Missing-90-of-Celiac-Disease-Cases/Page1.html quoting “Among their findings is likely ~1%, with 87% of cases being undiagnosed.” And the rate in the US is only marginally better at maybe 80% being misdiagnosed. They even pose this important question? “Why? Or How could this be?” They are puzzled at such a high misdiagnosis of Celiac disease. Quoting again “How could this be? One reason is that even classic celiac disease symptom, such as abdominal pain, bloating, gas, diarrhea, anemia and weight loss can mimic other conditions. Less classic symptoms such as fatigue, low vitamin C, D and calcium levels can be misleading.” Lupus is known as the great imitator disease. And Celiac or is it Pellagra could be called the same in 87% of cases if you are lucky. They say imitation is the sincerest form of flattery. Well not in this case (it is all out war). One disease is being disguised at the other. Which one to choose though since they both imitate each other. For me supplementation let me see which was the last disease/man standing so to speak. But let’s go back to our bunker(s) of symptom’s and defend/ask/consider how in 87% of cases we know we have the wrong disease. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html As to/for the IBS sufferers If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS? The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly just UC or other GI disease presumably. It is even worse in NCGS cases. https://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html 90% + of NCGS have the wrong diagnosis . . . but don’t point that to anyone because “I don’t have that disease” artillery will come out and blast you into smitherins. In the military it is called “friendly fire” whatever that means right. You can’t make anybody happy it seems. I am a “friendly” here. Tell someone (a Chron’s) patient they could have Celiac and duck for cover because “friendly fire” explodes. Pick your “poison”. . . IBS, UC, Chron’s, NCGS, SIBO etc. and be prepared to be gunned down in cold blood (forgive the analogy) lest you suggest somehow in some way a “differential diagnosis” makes more sense. A valid I dare say standard “process” of modern/good medicine is the differential diagnosis. If it is not the doctor has not done justice for you or you for yourself has not done you justice. Isn’t that what we all want – to know just what we need to do to get better that is justice/peace and good medicine. We are our own best advocate! Supplementation to me answer's that question and Is good customer service. Think of/about the show House who inevitably get’s the diagnosis wrong the first time and the second time and maybe (if it is not a two part episode) by the fourth or fifth try we learn an hour later what took months to determine you (the patient) has NCGS, SIBO, Chron’s, or Celiac disease etc. and the patient goes way coming in feeling crappy but goes away happy! Oh wouldn’t it be nice if “real life” imitated art sometimes. So if the “war” you find yourself in (Chron’s, NCGS, UC, etc. and yes Celiac disease) is imitating Pellagra then consider a “Differential Diagnosis” if you are like the 58% of Celiac’s who also have Pellagra. http://pubs.sciepub.com/ijcd/3/1/6/ Maybe . . . just maybe you will find you are like me and getting a valid differential diagnosis helps your GI problems too! The odds of this happening is (far) better than you think. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html I ask again Is Non-Celiac Gluten Sensitivity and/or Celiac disease really Pellagra in disguise in the 21st Century? Let me be clear. I think it is or was in my case. Because if you get the wrong disease the battle (war) in your GI will wager on but if it is Pellagra then the battle can be won. Peace how sweet the sound! If you have not heard of Pellagra and if it was not part of your valid “Differential Diagnosis” http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ Don’t’ be surprised by this most doctors’ have not either. Read Dr. Heaney’s blog posts where he summarizes why this is today! quoting “2014 marks the 100th anniversary of the war on pellagra, a war that lasted nearly 25 of those years before victory could finally be declared. You have not heard of the war on pellagra? The celebration is not on your calendar? You’re not alone. Why did it take so long? Was the science so intractable, like the current “war” on cancer? No. It was politics (differential diagnosis) and pigheadedness (Silos) that were the obstacles.” The science is valid. A Differential Diagnosis is “good” medicine but it will be hard to believe this because of our/are bunker mentality. (I know I have done the same thing) It is said the longest distance/foot in the world is the 12inches from your head to your heart. It only took me 4+ years of research to convince me that more than ever the 90+ percent of the most common GERD/Gluten/NCGS/IBS, Chrons’, Celiac disease issue(s) etc. GI problems are related to sub-clinical presentation of Pellagra unrecognized in a clinical setting. Or imitating first IBS and NCGS then Celiac disease (in time) if you will. If you know in your head something else is still wrong then let your heart be open to another front of the war co-diagnosis/co-morbidity/supplementation. Or if you have/continue(d) to develop more leaks in the dam (leaky gut, SIBO etc. or other food allergies in addition to gluten) then consider Pellagra as a valid differential diagnosis. Especially if CORN is now bothering you too! The medical definition of Pellagra first diagnosed/discovered in corn products 75+ years ago is Pellagra. Since auto-immune diseases rarely occur alone it only makes sense to tackle the easiest one’s first. On this board there are two camps. (It is true in many things of life). Supplementing or not to supplement is the 64K dollar question. The one’s who believes in supplementing readily attack the front (symptom’s) on/from whatever artillery (vitamins and minerals) they can find to shore up their defenses. The other camp prefers to hunker/bunker down and wait for reinforcement/symptom’s to get better and the battle/siege to pass. But in war there is an old saying. “A city besieged is a city taken”. I prefer to advance when possible to take the “fight” to the enemy. Supplementing allows me to do this. .. and this is how I learned to fight back Pellagra disguising itself as Celiac disease today. Disguise is a great trick of the enemy. For if you get the wrong diagnosis then the symptom’s never getting better and the battle/war rages on. But What If you have the wrong disease? Would you get better? This is dedicated to kareng for she once asked me why? worry about a disease I couldn't be sure I had over the one I knew I had. . . without supplementation I couldn't be sure if it was Pellagra or Celiac disease I was fighting. Supplementing answers/ed that question. It removes/d a front in the war. So what do you say are you ready to fight back the enemy? It might not be the one you think. Two front wars are rarely winnable. If they were I might be typing this in German. I need to stop for (now) but this is my story. . . maybe yours is similar you will only know if you are willing to try. I can only tell you what helped me. I can’t tell you if it will help you. Praise bee to God! To those who will hear and listen! Let me say (Thank you) at this point to Jmg. Thank you for taking the Magnesium and a B-complex and telling others how much they helped your "tiredness" etc. . . I know there is a lot of confusion out there. I am just trying to help those who are still suffering (losing the war). For a battle the war was lost. I implore you don’t’ let it (war/diagnosis) be lost because of “pigheadedness” to use Dr. Heaney’s words because you won’t try fighting back with supplementation. The Starfish Story Original Story by: Loren Eisley “One day a man was walking along the beach when he noticed a boy picking something up and gently throwing it into the ocean (world wide web) … Son, the man said, don’t you realize there are miles and miles of beach and hundreds of starfish? You can’t make a difference! After listening politely, the boy bent down, picked up another starfish, and threw it back into the surf. Then, smiling at the man, he said "I made a difference for that one.” . . . I hope that one is you reader -- fellow sufferer from a former Pellagra sufferer diagnosed as Celiac disease. I am that Celiac and Pellagra posterboy walking along the shore throwing starfish back or trying too! As I am fond of saying “To Educate is to truly free!” Where there is a free exchange of knowledge there is health and peace for one’s soul and body! Let’s all make peace for to educate is to empower to change. Change is not easy . . especially if you have a bunker mentality I grant . . . but possible with education for with education comes understanding. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (starfish/sufferer), by the comfort wherewith we ourselves are comforted of God.” Remember **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your regimen. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the Grace of God, Addendum: The Time has Come to talk of Walruses and Kings and Many Things (Hat tip to Jmg you know who you are – your wit is priceless) a horrible paraphrase of Lewis Caroll’s quote. I think I am an American who was born with British humor sometimes because who doesn't like a good quip. . . quote or misquote. Like your NCGS bit/disguised as NCIS. Imitation is the sincerest form of flattery -- unless it is medicine then it is the unkindest cut. . . (See I can't write a short thread/a long winded American with British wit) Truly the time has come for me to spend some time “mending fences” and spend more time either away on the farm helping my brother or at least a “little time” away somewhere else/doing something else. My changing life requirement(s) and other spiritual interest(s) has/will take/are taking me away from this board more and more till it is less and less. And in time people will ask what ever – happened to “posterboy” and his low stomach acid problems. I can only hope what I have shared here has lifted the tide of knowledge a little about stomach acid issues and your boat/life has been lifted enough for you to freely sail again. Take what you have gained and share. . . at every port you land in . . . who knows what/ where the wind of (life) might take you. I know I will miss many of you on this board but my experience does not match up with many others on this board and I don’t want to impose my ideas where/if they are not wanted or don’t seem to be doing any good. If anyone else thinks they may have low stomach acid who is reading this like I had feel free to PM me and I will try and answer any question I can but searching for the posterboy on celiac.com is the easiest way to find/answer most any question you might have. (For I can’t answer/write) a short thread and always tried to be exhaustive in my answers. I will still comment when from time to time if it feels right and my experience of low stomach acid being misdiagnosed can help those still suffering. https://www.celiac.com/gluten-free/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/ It is my hope that at least some starfish/sufferers have found hope/help in the things I have suffered with/and shared about how /what helped me. Praise bee to God! It only takes one to make a difference! Don’t every stop being your own advocate! 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (starfish/sufferer), by the comfort wherewith we ourselves are comforted of God.” 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,
  8. cyclinglady, I could not access that link. I went back and looked at the yahoo article it had a link to the JAMA site without being behind a wall. here is the JAMA link. https://jamanetwork.com/journals/jama/fullarticle/2521970 it is newer research so it might be awhile before doctor's start taking this into account when they treat heartburn/GERD. Even though they estimate as much as 70% have NERD instead. quoting from the fox article originally reported in the WSJ. "Gastrointestinal experts now estimate that 50 percent to 70 percent of GERD patients actually have NERD" which I believe when treated with PPI's leads to Bile Reflux. http://www.nytimes.com/2009/06/30/health/30brod.html And can be very difficult to recover from. . . especially if treating them with PPI's locks someone in to taking them forever exasperating the original condition. *** this is not medical advice. I realize there are no easy answer's but if people don't know about NERD or Bile Reflux they can't research it more. Knowledge and awareness is the first step to health and wellness. Again I hope this is helpful. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” posterboy,
  9. trents, I don't know if this would help you or not. but if the stomach acid is too low from taking PPI's taking betaineHCL can/would help if indeed your stomach acid is already too low from taking acid reducers. it can take two or three tries often to get off PPI's. Taking BetaineHCL helped me in place of taking PPIs. this was in the medhelp link I will provide "sickboy"s response for anyone who wants to try his/their way. . . but taking betaineHCL should help going cold turkey if you try and step back off PPI's again. obviously if you use his "toast" method to soak up your gastric juices it should be a "gluten free" toast. for context here is the medhelp link and post http://www.medhelp.org/posts/Gastroenterology/UNCONTROLLABLE-BILE-REFLUX-PLEASE-HELP/show/738242?page=1 UNCONTROLLABLE BILE REFLUX!! PLEASE HELP!! JayFaith "Hello. I have recently been diagnosed with bile reflux. I have SEVERE, CONSTANT burning in my stomach, abdomen, and chest area. The bile is refluxing not only into my stomach but my esophagus. It is so out of control that is has caused my esophagus to not open properly from the burning not being controlled. And most of all it has caused tachycardia with my heart to the point that when the burning is at it's worst I get heartrates in the 180's. It has been narrowed down that the bile reflux is causing my problems. I have a constant fire raging in my stomach/chest/abdomen. I was prescribed Questran and Welchol, both of which gave me severe heartburn and gas, which did not help because it just went from one type of burning to another. The only thing that seems to even help a little is Carafate, but not that much. The docs have told me that they don't know what other meds to try. Can anyone who has had experience dealing with bile reflux please offer some suggestions as to how I can control this. It has not been determined what the cause of the bile reflux is. I have had many tests done (hida scan, mri with mrcp, blood work, egd) the only thing I haven't had done is a small bowel follow-thru, gastric emptying study, and a colonoscopy. I am not sure what happened to my body. Prior to having bile reflux I had acid reflux for over 20 years and after seeing a post that said "activia" yogurt cured my acid reflux I decided to try it and after the 14th day my body exploded with excess gas, rapid heartrate(198), and uncontrollable belching(up to 20 min at a time), and severe burning that has not let up for the past 2 1/2 months. I don't want to leave this out because also during the 14 days that I ate activia I also went on a yeast/candida free diet and and sugar free diet and got 2 IV iron infusions for iron deficienty anemia. Not sure if these things had anything to do with it but I was pretty much healthy before I embarked on this 14 day diet change. Based on the testing apparently "activia" did cure my acid reflux because I no longer have acid reflux I now have alkaline/bile reflux. I am currently typing this from the hospital. During the last 2 1/2 months I have been hospitalized 8 times. All docs are puzzled and can't seem to help me. When I take any type of PPI, H2 blocker, or acid med even something as simple as tums or rolaids, the burning gets worse. When I tell the docs that they don't believe me but I have found many articles and posts that say that when you have bile reflux these meds make it WORSE....how come the docs haven't read this info? If anyone has any suggestions on how I can control this bile reflux thing please let me know. I am very desperate and in misery. Also, not sure why the bile reflux developed. I did have abdominal surgery but that was to remove fibroids and they used the same scar as a previous c-section about 3 months prior to this happening. I do have adhesions from the surgery but bowels flowing normally. When I ate the "activia" yogurt I am lactose intolerant, I think, and could I have possibly caused an ulcer in my colon. I read that ulcers there could cause bile reflux, but haven't had a colonoscopy yet. Right now I just really need a suggestion of what I can take to get out of this constant burning and pain and then I will continue my search for the cause. " here is sickboy's response Sickboy1 I have a cure that worked for me, bile relux has been plaguing me for 5 years and i had been getting misdiagnosed with acid reflux, until i started getting the severe esophageal pains that you described, so i went to 100% acid neutralization and was still getting the esophageal spasms/cramping, thats how i knew it was never acid reflux, i also had the abdominal buring, hydrochloric acid can not cause this, only bile can cause this burning sensation in the stomach, i also had the other clear bile reflux symptoms but doctors did not pick up on any of them? What a joke!! I eventually got a 24 hr pH test which clearly showed non acidic liquids jumping up from my stomach, contrary to what people think, bile acid is actually alkaline. What you need to do is realise that any acid blocking medication is making the problem worse, due to "Delayed gastric emptying", PPI are also known to aggrevate symptoms and cause attacks to be more frequent although not as severe. When i realised what i had to do to cure myself i panicked, i thought if i stop taking acid blockers i will be in agony within 12 hours, and i was right, i had intense esophageal pains that lasted 8 hours all through the night, i only ate dry toast and sipped water in between for 1 day, that night i slept with stomach pains and burning, the next morning, my condition was 10 times better, the burning had gone and my esophagus was breathing a sigh of relief. Its so simple when you think of it, bile is getting into the stomach! solution is to stop it getting into the stomach and to stop bile production, you do not need meds to do this just some bravado. How does this work? when we first went to the doctors are condition was not as bad as it is now, am i correct? We had bile in the stomach, our pyloric valve was weak, we had burning sensation, so we got put on acid blockers, they cause delayed gastric emptying which causes excess gas, and high pressure fat destruction dilates the stomach valves making the problem worse, allowing more bile in and alows it to damage the stomach for longer, delayed gastric emptying causes back flow and hey presto the bile goes into your esophagus and causes severe damage, this problem spirals downwards and the condition gets worse over time and causes additional problems. When we first got the problems, we probably were not looking after ourselves as we should fatty foods? late night snacks? overeating? If all we had done back then is changed our eating habits and lifestyle instead of going to the doctors we would have been cured years ago, in fact the problems would have gone in 24 hours. So this is how it works, which is all the opposites to the above, the problem causers, we need to improve digestion and gastric emptying, to do this we need to stop the acid blockers or any acid neutralizing drugs, we need to eat non fat non dairy products, small ammounts regular, the gall bladder reduces the ammount of bile produced, this meansevery time that stomach valve opens to empty, it takes the bile into the intestines with it, in the meantime the bread soaks up all excess stoch acids and bile like a sponge and stops it splashing up to the esophagus, hence why you should not drink until you feel your stomach empty, you do not want fluids splashing around. Imagine your valve is a door, imagine you are bile, you are on one side and every time that door opens you tries to run through, but when it opens a 1000 people on the other side coming running through the door in the opposite direction, your going to have getting through arent you, the doors is slightly ajar, so you sneak through and 1000 people are all stood still, so you make your way through the crowd, before you can get through the crowd surge's forward and drags you back to the other side of the door and down the street, lol. I can laugh about it now because it is all so simple, i spent years in agony and depression, get through that 24 hours and you come cback and tell me you do not feel 10 times better, the day after you will feel like the illness never happened, whenever you get a bit of reflux, eat dry toast and it will work 10 times better than any acid blocker did. Gradually build up your diet, rice and fish, fresh vegeatbles,the odd banana, sleep elevated to combat reflux, because no doubt you have lower esophageal impedence and you will find a new lease of life, forget drugs, the only thing that might help is Bile diversion surgery, but why even have that when it is so easy to self heal. Because you stomach acids will be back to normal level and food is being broken down properly to release nutrients you will also get all your energy back, because of the new healthy diet you will probably live longer and happier life. Natural things are always best, get plenty of excercise once you get your energy back, your stomach will empty even faster and your body will get even stronger and so on, just build on it and appreciate you got a second chance. Upvote - 0 Sickboy1 Sorry, i should summarize. The Problem The problems is bile getting into the stomach. The catalyst is delayed gastric emptying, causing backflow of acids into the esophagus The cause of delayed gastric emptying is acid blockers, low stomach levels. The Treatment(so simple it blows the mind) Speed up gastric emptying by stop taking acid blockers or any other medication and by eating small meals regular. Do not eat foods that will promote the production of bile. The Result You are cured, you have broken out of the viscious cycle and are in the recovery process, every time bile comes into the stomach it gets flushed back down into the intestines before it can do any damage. Long term your body gets stronger to the point where you actually cure the problem completely, the lower esophageal sphincter recovers from the constant bombardment and gets its strength back,reducing reflux symptoms, stomach muscles start to contract strong again, nutrients, vitamins, proteins and calcium get released from the food and absorbed, due to the stomach acids being at the correct level again and everything just starts spiralling back up. The Conclusion If you do not break the viscious cycle you will be plagued by this for the rest of your life, everything you try to do and every medication you take will cause other health problems and make symptoms worse." It is me again. This provided for anyone else who is still suffering maybe it will help the next person to read this thread. BetaineHCL supplementation should be researched for/as the best way to take it. here my blog post on celiac.com bout how I struggled with low stomach acid misdiganosed until helping my stomach acid issues helped most of my GI problems. taking more betaineHCL helped me more in the beginning. then I was able to taper off. taking only a little might cause some burning. so study about how much you should be taking but if it really low stomach acid then taking betaineHCL will improve your digestion unless you truly have bile reflux instead. This doesn't work for everybody but it works enough for most you should consider researching it more. but it helped me more to take 3 to 4 capsules with each meal in the beginning instead of only 1 or 2 capsules. **** this is not medical advice but it (taking betaineHCL) might help you transition off your PPI's for good. I hope this is helpful. posterboy by the grace of God,
  10. Jherm21, Please don't start the PPI's. While you can taper off of them. . . it can be near impossible to stop once you have started them (PPI's). see this thread about EoE. I also recently updated the gastritis or glutening post since it five pages long I will quote my response for easy reference to user "justsayno". quoted below in it's entirety. justsayno, "going low CARB can help the heartburn symptom's. or even Ketogenic which is basically NO carbs or atkins's on steroids for lack of a better term. here is a great thread that talks about the pro's and con's between me and Ennis_tx that he referenced in this thread but did not cite. but basically people have "rebound heartburn/acid reflux" when trying to go off PPI's cold turkey. newer research even indicates that taking PPI's can cause you to be locked into them. https://www.yahoo.com/news/gerd-stomach-acid-may-not-131750023.html quoting they say "Although this radical change in the concept of how acid reflux damages the esophagus of GERD patients (it) will not change our approach to its treatment with acid-suppressing medications in the near future, it could have substantial long-term implications," said senior author Stuart Spechler, M.D., in a statement. Dr. Spechler is a professor of Internal Medicine at UT Southwestern and chief of the Department of Gastroenterology at the Dallas VA Medical Center." no surprise there they even mention in the article Nexium alone generates $2.5 Billion a year by itself. Even if people don't get better taken their medicine . . . take it anyway because now you are locked on the medicine due to inflammation issues. because we are not changing our "approach to it's treatment with acid suppressing medications in the near future" read the whole article for yourself. but the "acid reflux" is not from acid at all or at least in some cases and probably more than they estimate since this is new research without many years of confirmed research behind it yet. quoting "In the new study, Kerry Dunbar, M.D., Ph.D., and her colleagues looked at 12 patients who had esophagitis (when the esophagus becomes irritated and swollen), a complication that isn't seen in every GERD patient. Each of the patients stopped taking their proton pump inhibitors for 12 weeks. The doctors took biopsies and closely observed what happened both before as well as 1 and 2 weeks after the patients stopped taking their medication. The patients did end up developing more damage, as the researchers thought they would. But the tissue didn't show a chemical-like burn that might be expected from stomach acid splashing into the esophagus. Instead, they found white blood cells, inflammatory proteins, and signaling molecules (known as cytokines), which are more consistent with what you would find when the body reacts to an injury." But inflammation is inflammation. Think more like EoE . .. . I hope this is helpful. Justsayno, I also recommend chris kresser's 3 part series on this topic. https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ where he highights many of the same points. Justsayno is a good attitude to have to staring PPI's if you have not already started because they are very hard to get off of once they have been started. . . but not impossible." Jherm21 it is me again. just search for the difference between "nerd or gerd" and a lot of good articles will come up about it. here is a quick search and one of the first one's that come up is the fox news article. http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html I will quote from it wither it is GERD or NERD: new type of heartburn doesn't respond to drugs/PPIs. "But up to one-half of GERD patients don't get complete relief from even the strongest acid-reducing medications, called proton-pump inhibitors (PPIs), and most don't have any evidence of acid erosion when doctors examine their esophagus with an endoscope. " and taking PPI's lock you in to taking them a lot longer than they ever were intended. pretty bad odds if you ask me? 50/50 and oh you will 90+ of the time never get off the PPI's once you start. Not to mention many of the side effects you develop why taking PPI's low Magnesium Levels and brittle bones etc. et al. not to mention possible kidney issues one of the first signs that PPI's are not nearly as harmless as once thought. ***this is not medical advice but I have seen it work for others. going low carb can help with your heartburn. please read all the links when you get a chance if you have not read them before especially the EoE thread. again I hope this is helpful. and that you will consider what I a say this included. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” posterboy by the grace of God,
  11. justsayno, going low CARB can help the heartburn symptom's. or even Ketogenic which is basically NO carbs or atkins's on steroids for lack of a better term. here is a great thread that talks about the pro's and con's between me and Ennis_tx that he referenced in this thread but did not cite. but basically people have "rebound heartburn/acid reflux" when trying to go off PPI's cold turkey. newer research even indicates that taking PPI's can cause you to be locked into them. https://www.yahoo.com/news/gerd-stomach-acid-may-not-131750023.html quoting they say "Although this radical change in the concept of how acid reflux damages the esophagus of GERD patients (it) will not change our approach to its treatment with acid-suppressing medications in the near future, it could have substantial long-term implications," said senior author Stuart Spechler, M.D., in a statement. Dr. Spechler is a professor of Internal Medicine at UT Southwestern and chief of the Department of Gastroenterology at the Dallas VA Medical Center." no surprise there they even mention in the article Nexium alone generates $2.5 Billion a year by itself. Even if people don't get better taken their medicine . . . take it anyway because now you are locked on the medicine due to inflammation issues. because we are not changing our "approach to it's treatment with acid suppressing medications in the near future" read the whole article for yourself. but the "acid reflux" is not from acid at all or at least in some cases and probably more than they estimate since this is new research without many years of confirmed research behind it yet. quoting "In the new study, Kerry Dunbar, M.D., Ph.D., and her colleagues looked at 12 patients who had esophagitis (when the esophagus becomes irritated and swollen), a complication that isn't seen in every GERD patient. Each of the patients stopped taking their proton pump inhibitors for 12 weeks. The doctors took biopsies and closely observed what happened both before as well as 1 and 2 weeks after the patients stopped taking their medication. The patients did end up developing more damage, as the researchers thought they would. But the tissue didn't show a chemical-like burn that might be expected from stomach acid splashing into the esophagus. Instead, they found white blood cells, inflammatory proteins, and signaling molecules (known as cytokines), which are more consistent with what you would find when the body reacts to an injury." But inflammation is inflammation. Think more like EoE . .. . I hope this is helpful. Justsayno, I also recommend chris kresser's 3 part series on this topic. https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ where he highights many of the same points. Justsayno is a good attitude to have to staring PPI's if you have not already started because they are very hard to get off of once they have been started. . . but not impossible. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” posterboy by the grace of God,
  12. KeJo05, If Eczema is your main complaint you need to check out this new research. https://www.nutraingredients.com/Article/2016/09/26/Mother-s-vitamin-B-levels-affect-eczema-risk-study-finds Look for a lotion/cream with Niacinamide in it as it's active ingredient. It can be found in the better acne treatments. It has/can been used for skin inflammation/eczema problems the same way it can help with Acne issues. The article cover's it well. I hope this is helpful. 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,
  13. Ellebelle91 Can you become Celiac if you are gluten intolerant? Absolutely! Here is the celiac.com article on this important question. https://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html quoting their summary "This study shows that gluten is definitely the trigger for symptoms in a subgroup of patients with clinical NCGS." IN fact the remission/occurrence was 90+ percent. Quoting again. "The results showed that 91% of patients had clinical relapse during gluten challenge compared with just 28.5% after placebo (p = 0.01)." Read the whole article for yourself. Without a positive blood test probably a better diagnosis would of been IBS. They did a tissue test through a scope and they did a blood test and it all came back negative. I was diagnosed at Mayo Clinic. Since antibody test's are pretty specific. . . . however the results for most IBS are similar to a NCGS/NCGI diagnosis. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html quoting from the article. "Nearly 84% of the gluten-free placebo group showed a significant improvement in symptoms compared to just under 26% for the (IBS) gluten consuming group (p < 0.001)." Here is a thread that talks about some of these same issues especially what is NCGS or NCGI. https://www.celiac.com/gluten-free/topic/118308-positive-dgp-not-celiac/ https://www.celiac.com/gluten-free/topic/118308-positive-dgp-not-celiac/?page=2 I have linked to both pages of the thread. It also links to an older thread that explains how you might have received your NCGS/NCGI diagnosis. Where someone else asks the same question. https://www.celiac.com/gluten-free/topic/116215-first-is-was-then-it-isn’t…-which-is-it/#comment-965813 The best research I have seen on the topic is the Columbia University study about the difference between NCGS and Celiac disease summarized in the above thread but here is a good link to the study for easy reference if you don't have time to read the whole thread right now. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html The biopsy could of been faulty causing a false negative especially if not many biopsy were taken because the small intestine despite it's name is actually quite a large in area. as to jmg comment on the biopsy he is right. Analyzing them is a special skill. see dr. ford's great article about how biopsy's can be misinterpreted without a good pathologists. http://drrodneyford.com/extra/documents/236-no-gold-standard.html where he (Dr. Ford) says an experienced pathologists needed "As you can see, this area of small bowel histology is complex. Not surprisingly, it has been found that community histologists are less likely to pick up small bowel changes compared with histologist whose speciality is the gut." after he notes "Electron microscope show damage in normal biopsies" so without good detective work on the part of a good pathologist even a "good sample" might initially/seem to show no visual damage except to the trained eye using special equipment. even those who showed "normal biopsy" and "They/that were kept on gluten. After several months, three of them had a second biopsy that subsequently showed histological changes suggestive of coeliac disease." also here is a great article that explains why multiple biopsies should have been taken. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5292331/ sorry to overwhelm you with information but I think it will all be helpful when you get chance to read it all. But you probably don't need a doctor to tell you what your body already knows . . . unless you want or need an "official" diagnosis for medical reasons. *** this is not medical advice but some research that helped me over the years to understand how these diseases/distinct clinical pictures differ. I hope it is helpful to you too! 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” Posterboy by the grace of God,
  14. Auto-immune Diseases

    celiaccomcedarpark, Let me add my welcome to jmg's. Activity on the thread triggers the renewal of the thread. I just wanted to add this new research on eczema in babies. tI has been tied to the nutrient status of the mother. . . so it possible you would need to be checked for Celiac or NCGS yourself. https://www.nutraingredients.com/Article/2016/09/26/Mother-s-vitamin-B-levels-affect-eczema-risk-study-finds We don't think about disease being inherited traditionally through vitamins in this genetic age but research is finding more and more research ever day is acknowledging the role stress plays in a celiac diagnosis. Who now's we might find it is more a 50/50 relationship than previously thought someday. They are even studying the possibility of a vaccine for Celiac disease someday. https://www.celiac.com/articles/23506/1/Stress-Common-Before-Celiac-Diagnosis/Page1.html and that B-Vitamins can help/are beneficial for those who have received a celiac diagnosis. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html I hope this is helpful as Jmg said for the next reader that comes along and finds this new research you have posted. I am certain you are not the only one who has noticed this connection between hsp and celiac disease and who might/benefit can help from it. And who knows who you might could help by sharing. 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,
  15. josephk116, this is to your original question. NSAIDs can cause villi atrophy. https://www.ncbi.nlm.nih.gov/pubmed/28220520 from the abstract. " Villus atrophy was associated with use of proton-pump inhibitors (PPIs; OR, 1.6, 95% CI, 1.1-2.3), non-steroidal anti-inflammatory drugs (NSAIDs; OR, 1.64, 95% CI, 1.2-2.2), and selective serotonin reuptake inhibitors (SSRIs; OR, 1.74, 95% CI, 1.2-2.5)." here is the thread on this topic. I hope this is helpful. ***this is not medical advice but NSAID's can cause villi blunting. here are other possible causes of villi blunting. http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/ good luck on your continued journey. I found my BP medicine Losartan was also causing me some lactose intolerance problems. see this thread. again I hope this is helpful. posterboy,