• Announcements

    • admin

      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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.


Advanced Members
  • Content count

  • Joined

  • Last visited

  • Days Won


Posterboy last won the day on February 10

Posterboy had the most liked content!

Community Reputation

18 Good

About Posterboy

  • Rank
    Advanced Community Member

Contact Methods

  • Website URL

Profile Information

  • Gender

Recent Profile Visitors

6,707 profile views
  1. Is it NCGS or Low stomach acid misdiagnosed Low Stomach Acid and Celiac Disease Dear Gluten Intolerant please consider Low Stomach Acid as a possible Differential Diagnosis as a possible way to achieve remission of your GI symptom's. “Consider what I say; and the Lord give thee understanding in all things” 2 Timothy 2: 7 Low stomach acid has now been linked to a probable cause of damage to the Small Intestine before and/or occurring with a Non-Celiac Gluten Sensitivity (NCGS) or Celiac diagnosis. See this research as reported on celiac.com that discusses the increased risk of/for someone to develop celiac disease after taking PPI’s. http://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html Note how the article starts quoting “Rates of celiac disease and the use of drugs to inhibit the secretion of stomach acid have both increased in recent decades. A research team recently set out to explore the association between anti-secretory medication exposure and subsequent development of celiac disease.” If these medicine are lowering stomach acid what cause effect relationship does/ could this have on Celaic/NCGS diagnosis is what he is postulating. He goes on to say without being very technical (read the whole article for yourself) that “The data clearly show that patients who use anti-secretory medications are at much greater risk for developing celiac disease following the use of these medicines. The fact that this connection persisted even after the team excluded prescriptions for anti-secretory medicines in the year preceding the celiac disease diagnosis suggests a causal relationship”. If even after a year OFF these medicines your chances of developing Celiac Disease (celiac disease) not to mention even NCGS which is much more prominent surely the researcher is correct in postulating that there is a cause and effect relationship between low stomach acid and NCGS and/or Celiac disease. Surely there is something we can learn here. I now postulate some homework for the reader of this blog post. Do some research for yourself and see if achlorhydia or hypochlorhydia symptoms don’t at least resemble in some manner all of the GI symptoms you have been having. (I note some of the many symptom’s low stomach acid can present with below as referenced from Dr. Myatt’s online article “What’s Burning You” for easy reference (It might not be what you think (my words)) It is important to note here that “some” symptoms does not mean all but many or several. It is called a differential diagnosis. It is an important diagnostic tool in medicine. Think of the tv show “House” where they spend the whole hour/over a week times going through the ‘differential diagnosis’ in short any one symptom can/have many different causes. The trick is how to quickly eliminate possible outcomes as symptoms (many) go up. All is usually never meet because that would make the disease in full outbreak and obvious even to the layman a condition described as “frank” or “classic” Scurvy or Rickets as an example. Sadly too often after 8 to 10+ years of testing after all the differential diagnosis’s are ruled out you are said by process of elimination to have Celiac Disease if you are lucky or maybe NCGS and not some other acronym GI disease as I like to refer to them as a group. GERD,IBS,UC, Chrons etc because if they turned down that street … . you are/could be in/at a dead end for they stop looking at the trigger (gluten) as the cause of your gastric upset/digestive disorder(s). So in summary if 3 or 4 or 5 or 6 of these symptoms overlap “many of’ these symptoms could be Low Stomach Acid related. IF that is the cause/case for you then there is hope! For remission! From Dr. Myatts’ Online article what’s burning you? From Dr. Myatts’ Online article what’s burning you? http://healthbeatnews.com/whats-burning-you/ Diseases Associated with Low Gastric Function Low stomach acid is associated with the following conditions: * Acne rosacea * Addison’s disease * Allergic reactions * Candidiasis (chronic) * Cardiac arrhythmias * Celiac disease * Childhood asthma * Chronic autoimmune hepatitis * Chronic cough * Dermatitis herpeteformis * Diabetes (type I) * Eczema * Gallbladder disease * GERD * Graves disease (hyperthyroid) * Iron deficiency anemia * Laryngitis (chronic) * Lupus erythromatosis * Macular degeneration * Multiple sclerosis * Muscle Cramps * Myasthenia gravis * Mycobacterium avium complex (MAC) * Osteoporosis * Pernicious anemia * Polymyalgia rheumatica * Reynaud’s syndrome * Rheumatoid arthritis * Scleroderma * Sjogren’s syndrome * Stomach cancer * Ulcerative colitis * Vitiligo When low in stomach acid we become low in essential nutrients Quoting from Dr. Myatts “what’s burning you” online article “Our bodies need 60 or so essential nutrients. “Essential” means that the body MUST have this nutrient or death will eventually ensue, and the nutrient must be obtained from diet because the body cannot manufacture it. Many of these essential nutrients require stomach acid for their assimilation. When stomach acid production declines, nutrient deficiencies begin. Calcium, for example, requires vigorous stomach acid in order to be assimilated. Interestingly, the rate of hip replacement surgery is much higher in people who routinely use antacids and acid-blocking drugs. We know that people who have “acid stomach” were already having trouble assimilating calcium from food and nutritional supplements due to lack of normal stomach acid production. When these symptoms are “band-aided” with drugs which decrease stomach acid even more, calcium assimilation can come to a near-halt. The result? Weak bones, hip fractures and joint complaints resulting in major surgery. Jonathan Wright, M.D., well-known and respected holistic physician, states that “Although research in this area is entirely inadequate, its been my linical observation that calcium, magnesium, iron, zinc, copper, chromium, selenium, manganese, vanadium, molybdenum, cobalt, and many other micro-trace elements are not nearly as well-absorbed in those with poor stomach acid as they are in those whose acid levels are normal. When we test plasma amino acid levels for those with poor stomach function, we frequently find lower than usual levels of one or more of the eight essential amino acids: isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine. Often there are functional insufficiencies of folic acid and/or vitamin B12.” Remember, these are essential nutrients. Deficiencies of any single one of them can cause serious health problems over time. Weak bones, diminish immune function, failing memory, loss of eyesight and many other “diseases of aging” are often the result of decreased stomach function.” It is me again reader. So low stomach acid is the triggering agent (often) for low nutrients. Make too much sense! Now don’t take Vitamin’s for this condition where low Vitamins/Minerals are known to be low in patients who have this condition because . . . . (if you do you won’t need to keep coming back to the doctor) I can almost hear the doctor say now. Of course he/she doesn’t say that . . . just that the “average person” doesn’t need to take Vitamins. Well I hate to break it too you . . . . but if you are having GI problems and reading this blog post on celac.com then you are not the “average” person. You my friend or a sufferer or a friend of a sufferer still looking for answers. If that is you then consider taking either powdered stomach acid – Betaine HCL or taking Niacinamide to help you reset your stress clock. A Canadian researcher wrote about this connection 15+ years ago but still most doctors’ don’t understand this connection between about how “Niacin treats digestive Problems” Here is the full link so you can research it more yourself. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml And you might not after a first reading. I didn’t believe it myself for over a year . . . but every time I thought about it – it (Low Stomach Acid) made/makes the most sense to me. **** Note: research this yourself. Here is a link about how to take Betaine HCL (powdered stomach) for maximum effectiveness. http://20somethingallergies.com/how-much-hcl-do-i-take-learn-to-test-for-your-correct-dose/ Don’t take my blog post as medical advice. It is only what I did . . . it might not work for you but I think it is worth a try especially if you are not now taking an acid reducer. (see notes below about why this might) be more difficult if you are already taking an acid reducer . . . because the rebound wall (see chris kresser link) keeps us locked in . . . sometimes for years. Since I was not taking acid reducers at the time I took Betaine HCL my stomach problems improved and I am sharing this now in the hopes it might help yours too! Now back to (really) LOW stomach acid being diagnosed as HIGH stomach acid these days. How can we know if it truly high or low? You’ve heard the phrase timing is everything well it is here too! Timeline is important in any diagnosis. IF your stomach acid was HIGH as you often hear (everywhere) you hear take a Proton Pump Inhibitor aka acid reducer’s for heartburn/GERD (medical name for heartburn) then eating food (carbs, greasy things) wouldn’t bother you. The acid would cut it up but if it is already low/weak then even a little acid can burn your esophagus which is not coated like the stomach to protect you from high acid. BUT if it is low to start with then food will WEAKEN our/your acid so that you lose the food fight your in and things (carbs/fats) become to ferment, rancidify and cause heart burn. Leading in time to Non-Celiac disease first and with enough injury (and time) to Marsh lesions qualifying you for diagnosis as a Celiac candidate / patient. See above link between/about PPI’s in the year preceding a Celiac diagnosis. If you (can) be that patient and weight the xx number of years for all this damage to occur, there is a better way it is called digestion! A virtuous cycle can replace the vicious cycle you are now in – it is caused digestion. Digest your food with healthy stomach acid and your body will thank you for it with the God given burp. A healthy child burps (at 6 months of age normally) and a healthy adult should too and you will again after taken Niacinamide 3/day for 6 months or this is not the right diagnosis. *********Note this is not medical advice only my experience with Niacinamide and my many years researching this topic as a fellow sufferer. Let me make these disclaimer(s). If you are a) experiencing heartburn that causing vomiting (with unintended weight loss) you may have a special case of heartburn that feels like heartburn (on steroids) that is really Bile Reflux and taking Stomach is not something you should do without medical advice and supervision. See this NYtimes article that discusses the many complications often seen with Bile Reflux patients and why it is treated as Heartburn often and why Bile Reflux is especially hard to recover from. http://www.nytimes.com/2009/06/30/health/30brod.html you are already taking an acid reducer then the chance you will get better (off of acid reducers completely) is only 50/50 on your first try but going low CARB can help your transition. Otherwise most people will get better when taking BetaineHCL for gastric support and Niacinamide to help them/you reset your digestive processes. See this online article about how Jo Lynne Shane got off Nexium for good. http://www.jolynneshane.com/how-i-got-off-nexium-for-good.html and her Epilogue http://www.jolynneshane.com/epilogue.html You will see she still struggles some but is much better when she let her natural digestive juices do their job. I call it the “Natural Order of Things”. See this article about the digestion process being a North South Affair from the bodywisdom website http://bodywisdomnutrition.com/digestion-a-north-to-south-process/ Taking it (Niacinamide) (or any B-Vitamin) should be taken 2 to 3/day (too keep up serum levels) for 3 to 4 months (the time you can store B-Vitamins) in the liver mostly. Once you have a distinctive BURP that displaces the bloating and sense of “I am going to explode” if I eat another bite (though you haven’t eaten half your meal) then normal digestion is occurring again. If you stool did not sink before this process (of taking Niacinamide begun) and burping became your “new normal” then it (your stool) will begin to sink too! Burping without bloating is the “Natural Order” of good digestion. Don’t stop this process of taking B-Vitamins as Niacimaide or Slo-Niacin 2/day for at least 4 months then you should see most of your GI symptom’s go into remission. (I did not say "cure" but remission from your cross contamination's (flares/symptom's etc.) might be possible. Because our defenses are now strong enough to cut up proteins before they reach our small intestine (where most of the damage is done). Think of a castle with a moat around it (stomach acid is designed to protect us) when it is low (the moat doesn’t protect us) and when the moat is dry the castle becomes a ruin!!! So do proteins (lactose (casein), gluten, soy, seafood etc.) to our small intestines (they become ruined) when our stomach acid (moat) is low or worse dry! I repeat again Timeline is important in any diagnosis. All heartburn is not equal. IF your stomach acid is truly high then it WILL occur between meals when there is no food to tamp down the fire (occurring in your stomach) not your esophagus. The excess pressure from fermented carbs push open the trap door allowing the low acid you have to burn the lining of your uncoated esophagus. See also this online article by Chris Kresser to study this more about why/how this could be a case of medical misdiagnosis in more detail https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ This is part of a 3 part series that I think you will find very informative. This (low stomach acid) is a vicious cycle. STRONG stomach acid makes it a virtuous circle/cycle. Now food benefits you because low acid not only causes heartburn it limits your body’s absorptive ability by limiting its ability to cut up your food into digestible peptides and amino acids which are no longer harmful to your Small Intestine but helpful to your overall health because nutrients can now be absorbed because the food particles are now small enough to not cause harm to your villi. I hope this is helpful and it helps you the way it helped me. Maybe it will help you in a similar manner. I write this only as a guidepost on your way. May you find your way back to digestive peace! The “Natural Order” of things! Praise bee to God! It is not a long way if you know the way . . . . from someone who has found his way back God being his help! There are more things I could say . . . but this post is getting kind of long but you get the gest. I noticed someone else on the celiac.com noticed the same improvement when they treated their low stomach acid and thought it was time a blog post talked about it. It is so much easier to consume all this information in one setting instead of hunting and peeking through several thread posts. Search for the posterboy on celiac.com and you will find it is my focus (how low stomach acid is misdiagnosed) and how Niacinamide helped me to restore its “Natural Order” in the digestive process because it helped me! Here is the link to the Prousky’s abstract. 15+ years is a long time for people to continue to suffer but if the research it right then Niacinamide might help you too! http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm Let’s hope it is not another 15 years before doctor’s and people realize low stomach acid can explain many of the same symptom’s an IBS, NCGS or even a Celiac patient might experience given a long enough time for these conditions to develop from too low a stomach acid to protect our Small Intestine. See link at start of this blog post posted here again for convenience. http://www.celiac.com/articles/23432/1/Do-Proton-Pump-Inhibitors-Increase-Risk-of-Celiac-Disease/Page1.html And it is worth noting about the time Celiac disease started (began to be more prevalent) / to increase in the population Acid reducer’s became more and more popular. *** Some plot the increase in time to Roundup usage but I am not buying it. PPI’s increase seam more plausible to me based on the relatively new research (less than 5 years old) is pretty current by research standards and the near linear response to increased first H2 stomach acid reducer’s then PPI’s in the population at large. *****Note: after I finished writing this blog post new research that in my mind confirms this connection was reported on celiac.com today that notes the link between gastric pH and impaired nutrient absorption. This very topic as I was getting ready to publish my post about low stomach acid possibly being diagnosed as Celiac disease on my posterboy blog mentions how a Celiac patient’s absorption can be impaired by gastric pH. https://www.celiac.com/articles/24738/1/Can-Celiac-Disease-Impair-Drug-Therapy-in-Patients/Page1.html Where they (researchers) say/ask discussing Celiac Disease and whether it (celiac disease) can impair drug therapy in patients. Note the opening paragraph discussing this topic quoting “Celiac disease is associated with numerous chronic conditions, such as anemia and malabsorption of some critical vitamins. Changes in the gastrointestinal tract, rates of gastric emptying, and gastric pH are responsible for impaired vitamin and mineral absorption." i.e., low gastric pH can effect absorption. It stands to make reasonable sense to me they are related conditions and one is being diagnosed for the other often or at least one is being confused as the other and treating one (raising your stomach pH) might treat the other since many of the symptoms’ are the same. *** this/these opinion(s) are my own and do not reflect an endorsement by celiac.com of these ideas, comments, thoughts or opinions. I hope this helps! You the way it did me! Good luck on your continued journey, 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. Posterboy by the Grace of God,
  2. Auberon, See this new thread started by Ennis_Tx that explain how Capsum in Peppers might mimic the same effect in the body. And here is an article featured on celiac.com that talks about how Medical Marijuana has helped others with their Celiac disease symptom's. https://www.celiac.com/articles/24644/1/How-Medical-Marijuana-Helped-Treat-My-Ongoing-Celiac-Disease-Symptoms/Page1.html I hope this is helpful. posterboy,
  3. glutenfreegirlfriend, I hope you are still following this thread. The vomiting bile and unintended weight loss can be a sign of bile reflux. Here is a NYtimes article on it. http://www.nytimes.com/2009/06/30/health/30brod.html here is thread about it. Getting completely over bile reflux can be difficult. I hope he finds something that works for him. ***this is not medical advice. good luck on your continued journey. posterboy,
  4. This sucks, I want to add to what Knitty Kittty said. We are the Niacin warriors on this board. Here is a long but informative thread that talks about where others' have discussed this topic exhaustively. I also recommend this thread where Knitty Kitty talks about how Niacin helped her itching associated with a DH rash. I hope this is helpful. posterboy,
  5. spirit_walk, I am sorry but I have not been able to read the whole thread. but I experienced your "popping" that you describe in the bones. Taking Magnesium Citrate helped mine. Here is a thread talks about all the benefits of Magnesium. Ennis_Tx and myself are the Magnesium Warriors on this board. Magnesium is really wonderful! You might want to read this thread about NSAID's too they could be making your GI problems worse. Also for the arthritis research into William Kaufman and Niaincamide. Niacinamide restores joint function/mobility in about 6 months of taking it 2 to 3 a day. Here is a link about that topic. http://www.doctoryourself.com/kaufman10.html fortutantely both the Magnesium and Niacinamide helps a lot of things. If you are not now taking PPI's the Niacinamide should help most of your GI problems in the same time it takes to help the arthritis. Here is a link about that topic. http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm *** this is not medical advice. I hope this helps. posterboy,
  6. mikehall117, GFinDC has given you good advice celiac's get low in a lot of nutrients. People who have low gastric function/stomach acid also have many of the same symptom's (and nutrient deficiencies) see this link by dr. myatt that shows the associated diseases that occurs when some one is low in stomach acid for years and years at a time. http://healthbeatnews.com/whats-burning-you/ quoting some associated conditions people can develop with low stomach acid. "Diseases Associated with Low Gastric Function Low stomach acid is associated with the following conditions: Acne rosacea Addison’s disease Allergic reactions Candidiasis (chronic) Cardiac arrhythmias Celiac disease Childhood asthma Chronic autoimmune hepatitis Chronic cough Dermatitis herpeteformis Diabetes (type I) Eczema Gallbladder disease GERD Graves disease (hyperthyroid) Iron deficiency anemia Laryngitis (chronic) Lupus erythromatosis Macular degeneration Multiple sclerosis Muscle Cramps Myasthenia gravis Mycobacterium avium complex (MAC) Osteoporosis Pernicious anemia Polymyalgia rheumatica Reynaud’s syndrome Rheumatoid arthritis Scleroderma Sjogren’s syndrome Stomach cancer Ulcerative colitis Vitiligo It also appears that many cases of depression, which appear related to too little neurotransmitters (which in turn are made from amino acids) may in fact be inability to absorb the necessary precursors due to – you guessed it – low stomach acid. I suspect there are a large number of other diseases that begin with a failing digestive system and that have not yet been recognized as such." Many of your symptom's seem if not exactly alike - similar enough that you might want to research it more. People who have celiac disease often can be comorbid with Pellagra and the doctor's don't recognize it today. Here is an article on celiac.com that discusses why this might be so.... https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html I know taking Niacinamide helped my digestive problems . . . may be they will help you too! I wrote a blog post on celiac.com about my experience maybe it will help you to read it. good luck on your continued journey. I felt like you 15+ years ago so there is hope people do get better but it is a slog sometimes. But I highly recommend Magnesium as Magnesium Citrate or Magnesium Glycinate for fatigue, cramps, and energy and Niacinamide for anybody with undiagnosed GI problems especially if you are not already taken a PPI or else the Niacin contradicts the acid reducer. but if you are taking PPIs now they are notoriously hard to get off of and most people fail the first time they try to stop them cold turkey. Going low carb not just gluten free can help. Think the ketogenic diet that is becoming more popular these days for good reason because many people's heartburn gets better when they cut out carbs. I hope this is helpful. ***** this is not medical advice posterboy by the grace of God,
  7. chicago wendy, Let first say. wow if you were diagnosed in 1978 you were a pioneer in celiac diease becoming more commonly diagnosed. I wanted to address your PPI question. ***** note this is not medical advice PPIs can be hard to get off of but they are worth trying to get off. This link explains why taking PPI's can make things worse. https://www.sciencedaily.com/releases/2007/02/070212185309.htm This is from the abstract dated February 2007 quoting "A new study may explain why individuals treated for acid reflux with proton-pump inhibitors (PPI) still experience reflux symptoms. Researchers from the Lynn Health Science Institute in Oklahoma City, OK, treated 15 individuals with significant complaints of heartburn, with either a PPI or with a placebo. After one week, all participants underwent monitoring and polysomnography, both of which were done after participants were given an acid-inducing meal to raise the baseline occurrence of reflux. Researchers found that, while total reflux events and acid reflux events decreased considerably with PPI treatment, nonacidic reflux events, such as stomach bile regurgitation, were significantly greater with PPI treatment. Researchers suggest that this increase in nonacid reflux events may explain persistent symptoms in some patients, despite being treated with PPIs. This study appears in the February issue of CHEST, the peer-reviewed journal of the American College of Chest Physicians." Note despite this research being 10 years old PPI's are still considered the gold standard for heartburn/ulcers. But if you read the fine print PPIs were ever only designed to be used for 2 months max and not as a way of life. Because they have such a high attachment rate very few people ever get off them the first time they try. Going low carb will help . . . it might not eliminate the heartburn but will probably allow you to step back on your dosages. Taking Niacinamide can help your ulcer heal. Here is the abstract but it might help you to read the whole paper if you want to do more research. http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm As to you question about how to test your pH (stomach acid) levels it is called a Heidelberg test commonly known as a gastric function test that basically involved swallowing a capsule with a string attached that can retrieved and most peoples true stomach acid level's are not tested before taking/begin PPI's. dr. Myatt discusses why this is so in her online article "What's Burning You". https://www.drmyattswellnessclub.com/WhatsBurningYou.htm 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,
  8. Carah, I think I am in that category. see my blog post where I discuss my experience and asked the same question "It has been 4 years is it now safe to eat gluten again" I think our stomach acid protects us against many of the foods/proteins we eat and when it is too low our autoimmune system gets activated. 70% of our immune is in the small intestine so it makes sense this is where we would first react to proteins/virus especially if our defenses are low. There is a great discussion today about new research that indicates that possibly a virus could of triggered our immune response first to react to gluten then after that our bodies constantly react to gluten but this give us hope that someday celiac's might be able to eat gluten if we can reset our immune system. I am glad to see your reactions are only minor in nature now but know you might be in the silent phase of the disease. You may be in the NCGS phase. This article explains well (I think) what the differences are between what it means to be an NCGS candidate or a Celiac disease candidate. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html but simply stated your immune response is triggered in the NCGS phase until the Villi becomes flattened in the formal Celiac disease diagnosis stage but they really are the same disease in different stages/phase triggered by the the body mistakenly attacking the gluten for a virus. It sounds like you might be in the NCGS phase now. . . because as the article notes the treatment for each NCGS or Celiac disease is the same and both disease/phases get better/improve after 6 months of being gluten free. More study is needed on this topic but in theory if your immune system resets itself after a certain period of time say 6 months as this article notes who knows someday they might be able give us a vaccine for gluten. quoting "The new study also found that it took about six months of a completely gluten-free diet for symptoms to subside." and sounds like what you might be noticing/describing. I would also recommend this thread where some of these same issues are discussed. ****this is not medical advice 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,
  9. Ennis_Tx, If at first you don't succeed try, try again. First I tend to be long winded from our discussions I begin to ask myself if it is not acid reflux then what are you refluxing. I had a friend who had similar conditions mainly puking back up and unintended weight loss and this explains exactly what she said she had and I didn't put two and two together. . . . no I couldn't help her either and I doubt it will help you but once you know what you have (if indeed it is what you have) then you can begin to get better I think. think about when you/we got our celiac diagnose then we begin to get better. Bile Relux this nytimes article explains how the symptom's are similar and how they can be confused often for each other. http://www.nytimes.com/2009/06/30/health/30brod.html quoting from the article "Symptoms and Causes Both acid reflux and bile reflux may afflict the same person, which can make diagnosis a challenge. But the stomach inflammation that results from bile reflux often causes a burning or gnawing pain in the upper abdomen that is not felt with acid reflux, according to experts at the Mayo Clinic. Other symptoms of bile reflux may include frequent heartburn (the main symptom of acid reflux), nausea, vomiting bile, sometimes a cough or hoarseness and unintended weight loss." They can be similar in the way both conditions present and why I keep saying it has to be acid reflux but acid reflux doesn't produce (typically) the unintended weight loss (usually) the way bile reflux does. Having said that treatment can be elusive. I wanted to provide you with that list of digestive enzyme/ digestive aid (home remedy) herbs that might could help. see this link that list several different herbal base treatments that people often use to treat their bile reflux. https://www.homenaturalcures.com/bile-reflux-home-remedy-treatment/ I think you said you drink teas through the day so you might try this herbal recipe I found on medhlep about people treating their selves with their own homemade teas. many of these herbs are listed in the homenaturalcures homeremedy list too. by user looy56 "Thank you for the information. I make my own tea. Chamomile flowers, slippery elm, marshmallow root. Wow does that help. Learned it from the web site Helium by Frank Will all on Bile Reflux. My boyfriend does herbs all the time. i drink my tea all the time. it also relaxes you. Loony 56" Here is the medhelp discussion thread that talks in more details if you want to try some of the same home remedies http://www.medhelp.org/posts/Gastroenterology/Bile-Reflux-Gastritis/show/1939043 here is a 2nd medhelp thread that follows other ways people helped them selves with their bile reflux. http://www.medhelp.org/posts/Gastroenterology/UNCONTROLLABLE-BILE-REFLUX-PLEASE-HELP/show/738242 maybe some of their experience will help you with the problems you are dealing with. the tea method sound like it might be easiest to incorporate into your daily routine. **** this is not medical advice. Sorry I went down the acid reflux lane. they look a lot alike. I hope this is helpful. posterboy,
  10. Jherm21, The people on this board have all given you some good advice. I would suggest B- sublinguals because if you have low stomach acid or are taking PPI's your B Vitamins can still be absorbed through the blood vessels in your tongue. People taking PPI's often have to take much higher levels of certain vitamin/minerals because they absorption can be limited. Sadly Mermiad's Mom is right most vitamin levels are set at such a level that when you are "technically" low evidence of disease has already shown up so the doctor can diagnose it using only a few key clinical observations. The earlier you can catch any vitamin/mineral deficiency the better the prognosis and quicker the recovery. Take your B12 deficiency in it's most advanced state Pernicious Anemia the nerve damage you describe but it is not permanent. It is just the sign of the deficiency. I had the same nerve damage the doctor's describe (your words as permanent). I would wake up in the night from my body's nerve endings tingling like my my the whole side of my body would go numb with pain. a "classic" sign of a b12 deficiency but my nerve damage was not permanent. When I took b12 sublinguals my nerve damage healed. b1 deficiency is common and reversible. see this link https://www.ncbi.nlm.nih.gov/pubmed/16987159 entitled "Thiamine (vitamin B1) deficiency and associated brain damage is still common throughout the world and prevention is simple and safe!" Many B-Vitamins are like this. see this link that explains how "Niacin treats digestive problems" unless you are taking PPI's then they block your bodies ability to produce stomach acid "locking you in" to continual usage. http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm Add Magnesium Citrate or Magnesium Glycinate and you can help your chronic fatigue 3/day (with each meal). Just keep any doses 3 to 4 hours apart to limit Magnesium flushing your bowels. Magnesium Glycinate doesn't do this but is harder to find than Magnesium Citrate. Magnesium helps cramps, and provides for restful sleep. There was even a book written about it's many great qualities "The Magnesium Miracle" see this topic started by ennis_tx it has a great link in it listing all the benefits of Magnesium to the body. I think once you start a sublingual and Magnesium you wont' believe how much better you feel. And yes Vitamins can help us even when we are low normal. They have already mentioned this in this thread but other countries have much higher limits on their RDA. The FDA sets the US' RDA of Magnesium at 400 mg where the Canadian RDA is 50% higher at 600mg. ****this is not medical advice I am glad you were able to find out about your deficiency's before they got so low the doctor's could recognize the "frank" case of Pernicious Anemia like me but . . . I got better when I supplemented with my "low" or missing nutrient like Magnesium and my chronic fatigue, muscle cramps etc. And my b12 deficiency and my damaged nerve endings. I hope this is helpful. posterboy,
  11. Mermaid's Mom, Tg6 is the antibody test you are looking for to see if the neuorlogic problems are gluten related. Just search on celiac.com for Tg6 and several articles will come up. I will link a few here for you to research. https://www.celiac.com/articles/23275/1/Can-Transglutaminase-6-Antibodies-Help-Diagnosis-of-Gluten-Ataxia/Page1.html quoting "Follow-up screens showed that one year of gluten-free diet left TG6 antibody levels greatly reduced or undetectable. The study shows that antibodies against TG6 are gluten-dependent and that they seem to be a sensitive and specific indicator of gluten ataxia." Researchers in Israel has actually linked ALS symptom's to gluten antibodies. see this link https://www.celiac.com/articles/23967/1/Israeli-Researchers-Propose-Link-Between-Gluten-and-ALS/Page1.html There was actually an earlier study that showed a gluten allergy could present with/as ALS like symptom's they say celiac "mimicked" ALS in it's presentation. Here is the link in a few more months it will 10 years old but since doctor's don't cross talk between diseases well the link/research goes un-noticed often. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html I hope this is helpful. posterboy,
  12. bl0nde, I don't have a lot to add but this thread talks about how to substitute any ingredient in sushi to make it gluten free. https://www.celiac.com/articles/23449/1/How-to-Safely-Order-Gluten-Free-Sushi/Page1.html Maybe it will be helpful to anyone trying to figure how to do that. I like steamed rice just fine but find sushi rice to "squishy" for me but I do like the way my sister makes it (having traveled to and lived in Korea for a while) she has mastered how to make nice gluten free sushi for me every time I visit and since she goes to such trouble to make it for I can't say no. But if you are ever dining out in a restaurant the above thread has some nice tips to keep in mind. I think many are already mentioned in this post but the above thread just puts them in one place as a nice summary. I hope this is helpful. posterboy,
  13. Knitty Kitty, Nice find. YOU always do good research. I found about the NSAIDS a few years ago but I didn't know about the SSRI"s link. It is amazing how far back the the NSAID research goes and rarely is this fact ever mentioned about how many of the drugs we take can make may of our GI problems worse. Here is the NSAIDs study from 30+ years ago. https://www.ncbi.nlm.nih.gov/pubmed/3780475 The Dailybeast ran a good article on this topic a couple years ago now and it blew me away when I read it and like Ennis_tx swore off most all pain killers unless I thought I absolutely couldn't stand the pain. http://www.thedailybeast.com/articles/2014/04/21/research-shows-link-between-nsaid-use-and-gut-disease.html I hope this is helpful. posterboy,
  14. Washingtonmama, I agree with gluten-free-Cheetah Cub if you talk to the manager they don't mind you bringing things in for yourself (usually) since you paid for the buffet already. But I find I gravitate to things I know I can eat safely and eat to my heart content. It might be crabmeat and cheese or mushrooms and cheese or baked fish or ham or jello or mandarian orange slices and get a whole plate of the one or two things I know I can eat. I do the same thing with my prediabetes I celebrate that I can eat as many omelets (when I go to a breakfast bar as an example) as I like . . . I just have to eat sweet potates instead of fries (which often are cooked in a frier that has been shared with breaded things) or have bacon as my side with my eggs or have sauteed mushrooms as my side from the bar instead of hashbrowns. And if I eat omelet's (as an example) they are prepared fresh for me. You could bring your own soy sauce but you still might have cross contamination issues. If you stick to tried and true naturally gluten free things like baked fish or ham etc and two scoops of ice cream for desert you should be able to manage to get out with much trouble. Or enjoy some sushi. Note not all sushi is gluten free but here is a great article on celiac.com that is a "cheat sheet" on how to make sure you can choose to make sure it is gluten free sushi or how to decode things in a chinese restaurant to avoid hidden gluten. https://www.celiac.com/articles/23449/1/How-to-Safely-Order-Gluten-Free-Sushi/Page1.html I know I learned things from reading it because as a rule I stick to naturally gluten free things of a more western nature like ham or mushrooms but I find what I can eat that and eat that instead in short but the celiac.com article is a great overview of how to cope when you must eat at chinese buffet or sushi and not sure how to do it without getting glutenized. Just my two cents worth. posterboy,
  15. Blessedmewith4, I vote for the shellfish allergy. I have had friends who had similar shellfish allergy issues and it sounds just like the episode you describe especially the tingling lips. They don't know what triggers it often. They may been able to eat shellfish before with no reaction but after the reaction they can't eat shellfish again without risking asphaxiation. While my friend stops if he accidently consumes shellfish like in sauce for example his luckily is not bad enough to take him to the hospital (now that he knows about it) but it can bee if he doesn't stop as soon as he notices his tingingly lips symptom. Here is an article/link from FARE (food allergy research and education.org) that list the things that might have triggered your possible shellfish allergy. https://www.foodallergy.org/allergens/shellfish-allergy quoting "There are two kinds of shellfish: crustacea (such as shrimp, crab and lobster) and mollusks (such as clams, mussels, oysters and scallops). Reactions to crustacean shellfish tend to be particularly severe. If you are allergic to one group of shellfish, you might be able to eat some varieties from the other group. However, since most people who are allergic to one kind of shellfish usually are allergic to other types, allergists usually advise their patients to avoid all varieties." I hope this is helpful. posterboy,