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  1. Ennis and Cstark, I wanted to reply to this topic but have been busy with other things (stressed) so I am finally getting around to it. reported these findings and explains why stress (not day to day stress) but Trauma really can trigger worse symptom's or often preceed a formal diagnosis often. Recent research even notes that stress associated with a Celiac diagnosis can trigger higher risks in spouses of those who have not developed Celiac disease yet (or those whose often (Spouses) can't get a diagnosis for it because they don't have the right genes for it). see this link where they say quoting "While the excess risk found in celiac first-degree relatives can be explained by genetics, the higher risk in spouses points to the impact of environmental factors" like stress in their environment. Mind you these people don’t’ have the genetics for it. Now technically if we listen to “Classic Genetics” only those who have the Celiac GENES can get sick of Celiac disease? Right? How can this be? Well they forget to consider the “external triggers” STRESS … ie their Environment? See this information is reported on now almost over 3 years ago this month of earlier research reported 15 + years ago. Quoting the above link on "A number of earlier studies (Molberg et al., 1998; Anderson et al., 2000; Shan et al., 2002) have found HLA-DQ2– and HLA-DQ8–restricted gluten peptides that trigger the adaptive immune response in people with celiac disease. However, only 2–5% of individuals who show these HLAs develop celiac disease, which means that other factors, especially innate immune activation, are at play in the generation of celiac disease." ie an environmental trigger like Stress or too much of it is involved in someone who develops Celiac disease. I will quote here again from “research that suggests that gluten proteins might trigger an immune response in people who do not have Celiac disease, and (THOSE ) my words added for emphasis) who do not carry the HLA-DQ2 or HLA-DQ8 genetic markers that predispose them to developing Celiac disease. Such a response is part of a process called innate immunity, and is far less understood than the adaptive immunity process.” They recognize these findings but are not sure what to make of them since traditionally only people with Celiac genes are being diagnosed as able to get Celiac disease. When they summarize quoting them again "The findings of this study mean that the proteins in wheat may trigger immune reactions not just in people with celiac disease, but in people without celiac disease (genes), and that these reactions may be actively contributing to the development of numerous other intestinal and non-intestinal immune disorders. That's a pretty big deal." I couldn't agree more! That is a big deal often overlooked today by many doctors. I am not sure how to quote them but the user ravenwoodglass on this forum says as much concerning her diagnosis. Quoting " Posted yesterday at 05:01 AM · Report post It is very important that you get her back on gluten immediately. She needs to be still on gluten for any blood work or an endoscopy that the GI will want to do. Call the Gi's office and ask to speak with a nurse and tell them about the probiotic, vitamins and digestive aids that you are giving her. The doctor may want to run vitamin panels and the supplements could interfer with getting her correct levels. The nurse will likely need to call you back after he/she talks to the doctor. She can get probiotics from the Kombucha, yogurt, saurkraut or any other fermented food. I am not a fan of using the gene tests as part of the diagnostic process. There are cases when diagnosed celiacs have not carried the most common celiac associated genes. While it is rare I am one of them. Research is still going on concerning all the genes associated with the condition. It wasn't until a few years after I was diagnosed the my gene finally was recognized as associated. I hope the GI gets you in soon. Do make sure to keep up with the gluten. Just a couple pieces of bread worth of gluten should be enough. It is very important she have a formal diagnosis for accomodations at school, hospitals etc." from the thread My point is it might not be as rare as some doctor's think. And they often don't include stressful events in your life that can trigger if is right the onset of a Celiac diagnosis. Who knows? how much suffering could be avoided if those without "Celiac" genes also could be diagnosed like Ravenwoodglass was despite not having the most common gene type for Celiac disease. According to Dr. Verdu a Canadian Celiac researcher “We know that there is a delay of at least 10 years in the diagnosis of celiac disease… it’s not only in children, but in adults too — especially in adults,” wouldn't it be great if doctor's who knew these things and help those who didn't. If you want to read the article where I quoted Dr. Verdu from relatively new (a couple year old) research follow this link researchers find possible treatment for Celiac disease. And that is presumably for those who have the "genes" for it. And yet it takes 10 years often. My diagnosis took 30+ years and I would of loved to have found out in only 10 years time. How about anybody else? So yes STRESS is a killer but it maims us first. Who knew right? Good luck on your journey and for those still looking for a diagnosis don't stop. It does get better. I just hope for those still looking it doesn't take 30+ years like it did for me. Quoting Dr. Verdu again because "especially in adults" it sadly takes longer often to get a Celiac diagnosis. Surely stress is a Killer. And it is the wait that is killing us if you are one still looking/waiting for a diagnosis. I hope this is helpful. Posterboy,
  2. Fyremaker, I know there is a more up to date reference to this but I can't ever seem to find exactly what I want using the search function on so here is the older reference on but just Google Benicar and Celiac sprue symptom's. Some medicine can cause some of these same symptom's. It could also be ibuprofen if you have a lot of pain you are dealing with according to the dailymail So don't rule other causes without doing a thorough examination of your environment but if going gluten free already helps then I think you have found the trigger. Timeline and history are important with diagnosing someone with any disease. I had similar symptom's many years ago now when trying Psyillium fiber (Metamucil) for regularity. It made me anything but regular! Did your downhill slide start soon after you started the Pysillium? If so you could be having an allergic reaction and have not put 2+2 together until you have stopped to think about it. despite being gluten free and not until I stopped my dietary fiber did my bloating, distension and gas go away. I hope you have found your trigger. But what I think is happening and I know this is controversial but new research from Columbia University seems to bare this out that when blood test are positive villi damage is actively occurring but when the blood test is negative the villi has already been destroyed ie blunted as someone on this post describes. The care2 site summarizes these finding very well I think about the difference between wheat sensitivity, NCGS and Celiac disease. Quoting "People with suspected celiac are screened using a blood test that looks for anti-gluten antibodies. The disease is then diagnosed with an intestinal biopsy showing this damage. However, celiac patients do not have an associated spike in their blood markers indicating high immune activity. This is where NCGS patients differ. While these patients don’t show the same kind of damage when they’re given a biopsy, their blood panels tell a completely different story. This group showed a spike in blood markers associated with intestinal damage unlike anything seen in the celiac or control group. They also showed a systemic immune reaction after consuming wheat, which is a major difference from the more limited immune reaction of celiac patients." Read the whole article for yourself. We like to think in absolute's meaning if it is one negative (blood) we don't understand how the other is positive (biopsy). But here I think it does a disservice. It is not both has to be positive to have a positive result and why you could first be positive blunting but negative blood antibodies. I think the history of the "gold standard" is instructive here as well. Read the whole "Gluten Lies" review if you are up to it by the Dangerous Grains Author Dr. Hoggan as seen in the latest edition Journal of Gluten Sensitivity and posted on under recent news articles. Link provided here Quoting Dr. Hoggan in his review of the Gluten Lie "It appears that Dr. Levinovitz has not experienced the challenges of getting appropriate testing for celiac disease, so he doesn't understand. Perhaps he missed all the twists and turns that researchers have experienced on their way to choosing villous atrophy as the defining characteristic of celiac disease? He may not realize that the "gold standard" intestinal biopsy was a retrofit added to the diagnostic criteria for celiac disease to counter the widespread resistance to Dr. Dicke's claim that dietary gluten was the cause of celiac disease. Gastroenterologists simply wouldn't believe that gluten could cause celiac disease without some rigorous testing that ultimately excluded many of the folks who were previously diagnosable with this ailment, many of whom died from it. So the diagnostic criteria began with a constellation of gut symptoms, then it relied on an intestinal biopsy showing damage that was reversed by a gluten free diet. Now, those who have the same symptoms, which also respond to a gluten free diet, and who might previously been diagnosed with celiac disease, are now thought to have non-celiac gluten sensitivity." If the "gold standard fails us" it is because it probably is a poor standard but if we can believe the new research by Columbia University then when "Both" the gluten antibody test from a blood serology panel is POSITIVE for an active ongoing villi crypting (atrophy) and biopsy is POSITIVE for "blunted" Villi for those Celiac's at another time it is for those who have already destroyed the majority of their villi as proven by biopsy then both could be "first I am Celiac and now I am not" because both don't easily match up. But if both alone are POSITIVE indications of a Celiac diagnosis. Then we have our answer. But the Columbia research clearly indicates both do not occur at the same time which matches your results perfectly according to these new findings. I will quote again for easy reference "This is where NCGS patients differ. While these patients don’t show the same kind of damage when they’re given a biopsy, their blood panels tell a completely different story. This group showed a spike in blood markers associated with intestinal damage unlike anything seen in the celiac or control group. They also showed a systemic immune reaction after consuming wheat, which is a major difference from the more limited immune reaction of celiac patients." Quoting again "However, celiac patients do not have an associated spike in their blood markers indicating high immune activity." that you might expect in blood panel so one could be negative (blood work and one positive (biopsy) and they both are positive for Celiac diagnosis it just those with high immune activity have not YET blunted their villi the way one expects to find in "gold standard" biopsy. Which according to Dr. Hoggan is not so "gold" as maybe stone age treatment of Celiac's. This explains perfectly why one does not have to match the other to have a positive diagnosis. Only if doctor's knew more about this latest research untold suffering could be avoided. The good news as the care2 article summarizes Quoting "Though the cause of the two conditions seems to be very different, the study confirmed that the best treatment is the same for both conditions. After six months of only consuming gluten-free grains, the NCGS group reported a significant improvement in their digestive and non-digestive symptoms, and the immune system markers identified earlier in the study had normalized." I hope this is not too much information to digest all at one time. You may want to reread the Care2 article a few times to completely understand this new research especially if this is the first time you are reading it. SADLY if Columbia University is right your Villi by the time the "biopsy" low immunity level has occurred then most of your villi have already been destroyed. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. **** 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. This is my opinion only but I hope it is helpful. But/just after years of research which can be hard to interpret sometimes it makes the most sense to me given your results and new research on the topic. Posterboy,
  3. egs1707 etal (cstark mr. Pep'r, Ennis) I know Magnesium really works. There is actually a book called "The Magnesium Miracle" that talks about a lot of these benefits that Magnesium can offer people by Dr. Carolyn Dean. I have not read the book I found George Eby Research website had more than enough information about Magnesium to learn about it. And it is free and how you can you beat free right. You are said to "waste away" when you don't have enough Magnesium to make energy in your body. But it must be in the Citrate or Glycinate (non-flushing) form for best absorption when used orally. You so readily need Magnesium that the Magnesium Oil you used was easily absorbed through the skin think epsom salts. Iodine is the same. Apply Iodine until it stains the body (skin) for 6 hours or more and it will help your thyroid problems that and Brazil nuts (a good source of Selenium) that the thyroid needs to work properly. If it doesn't stain you you are probably low in Iodine and don't know it. Mr. Pep'r the side affects you list are the highest dosages usually. Go back and read my post and why I mention the "Magnesium Flush" that can occur in higher dosages typically in the first 30 minutes of really high dosages. Typically in multiple dosages at the same time. So/but as long as you give yourself 4 hours between dosages in PILL or capsule form I think you won't experience that. Ennis is correct to say ease into if you are concerned. There is popular powder form called "Natural Calm" in the Citrate form that works very well too if want to try it that way but I find it is easier to get too much that way and prefer the pill form. IF you get too big a teaspoon of the Natural Calm these same things can happen. Drug stores now usually stock the Magnesium Citrate in a Naturesmade Liquidgel in 150mgs size that could be easily taken 4/day to make up for the 50mg less you get in the pill form 200mg 3/day size. Used to be you could only find it in the normally useless Magnesium Oxide form which is harder (near impossible) for the body to absorb but because its a few dollars cheaper to make is the one you typically find on most shelves. Look for the CITRATE form and your body will think you for it with less muscle cramps, more energy and restful sleep usually in the first month. Notice egs1707 response to it in the first week of using it. Don't take it in the oral liquid form found in Pharmacy's used as presurgical flush of your bowels THEN you will do just that which is 10X stronger. But in 200 mg sizes 3/day you will really be amazed how much more energy you have. I hope this is helpful. Posterboy,
  4. Mr. Pep'r, If you are having Iron problems take some beta carotene. It can improve iron absorption by a factor of three. The Journal of Nutrition link is a technical response. The NCBI link is a more summary form quoting "This information suggest that vitamin A and beta-carotene form a complex with iron keeping it soluble in the intestinal lumen and preventing the inhibitory effect of phytates and polyphenols on iron absorption." I like to say eat some carrots but make sure to eat it with some fat. Like your favorite dressing. Beta carotene needs fat to help your body absorb it better. Often people have enough iron but too often it is stuck in a non-heme form. This link by the NCBI that studied iron deficiency anemia in Venezuela summaries it well. Beta carotene is especially powerful in unlocking this non bio-available form to one that can be used by the body. I have a friend who has the same problem and researched it for him. He iron levels are now improving reducing his need for iron shots. Sometimes with nutrition you have to know where to look . . . and I have looked so much I often have a clue of what might help or where to look in the first place. A quick google/bing search pulled up this links right away but if you had no idea to look at the beta carotene/iron axis then you wouldn't know where to begin to look. I hope this is helpful and good luck with you iron levels. *** this is not medical advice just years of experience researching nutrition. Posterboy,
  5. cstark et al, (ennis and ironictruth etc), It is not uncommon for Celiac's to be low in many nutrients obviously (see ennis commment) but I found that when I found Magnesium helped all my fatigue issues drastically improve. Look up George Eby and magnesium and you will learn all you ever imagined about how Magnesium helps us make energy. I recommend it to any who is having energy problems of any kind. This includes muscle cramps, fatigue and sleep problems. He say's he used it to treat depression and my moods did improve after I began taking it. But it is important (as is often the case with vitamins) to get a bio-available form. Magnesium CITRATE is the form best absorbed (or Glycinate which can be a little harder to find) by the body. 200 mg taken 3/day (with meals) will really help energy levels. I almost never have muscle cramps ever now and sleep soundly at night without needing to take a nap when I get home (and almost always had to before). I summarize it this way as Chlorophyll is to the plant so Magnesium is to the animal. Meaning we physically can't make energy with out. I think your energy levels will pleasantly pickup if you will try the Magnesium Citrate. Harder to find but your body will think you for it. Nuts are good sources too! Especially Almonds and Cashews and they are an even better source of Magnesium if Chocolate covered but is not necessary. This is not medical advice only personal experience that has helped me and friends who take Magnesium CITRATE to help our fatigue issues. Magnesium works so well that if low magnesium is your problem when taking in divided doses at least 2 to 3 hours apart energy almost immediately picks up in the first month of taking it. If you prefer to take it more time daily you can take it one hour before bed time too but each dose needs to be at least two hours apart to absorb your previous amount/dose or Magnesium in doses above 400 mg will for most people cause a "flushing affect" of a movement 20 minutes after doses larger than 400 mg is taken at one time. Keep any Magnesium doses at least 2 hours apart (Glycinate does not do this) and you will be very happy I think with all the energy you seem almost to instantly have. And often you will dream after beginning the magnesium probably after never never remembering your dreams for years. I still take to this day at 400mg a day of Magnesium Citrate as a maintenance dose. Good luck on your journey and I hope you have the energy to do some of your favorite things soon. Posterboy,
  6. Pegleg84, To answer your question about IBS and Celiac disease it not well understood that their is a continuum of disease often. ONE can lead to the other in time. Co-morbidity is hard to prove but new search is noting it does happen more than doctor's realize. See this link from where they say Large numbers (84%) of IBS patients are sensitive to gluten. Quoting "The doctor’s admit as much saying this IBS diagnosis “may delay “an effective and well-targeted treatment in (IBS) gluten sensitive patients” The Celiac Posterboy blog summarizes these findings You might also want to lay off your dietary fibers for a while because the main ingredient in Metamucil is known to cause many of the symptoms you describe with your IBS diagnosis. See this drugs. com link to see the side effects of Pysllium husks. While it might be counter intuitive at first to scale back your dietary fibers it can be helpful to do a diet elimination of possible IBS triggers when there is any doubt for a month at a time to see if "hidden" dietary triggers might be the cause and you might be doing more harm than good despite your best efforts. A month off of your fibers then reintroduction in your diet should be enough to tell if any of your symptom's improve in that time. ** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. Good luck on your journey, Posterboy,
  7. Beachgirl, I do not have microscopic colitis but I agree with GFinDC. It is not uncommon to have multiple GI diseases in the same person. It is called Co-Morbidity. I do a lot of nutrition research (5+ years since my Celiac diagnosis) and it is sad to see how often doctor's don't find/recognize gluten as the trigger and a totally avoidable condition could be eliminated. Most people will show symptom improvement (flareup remission) in a month of being dedicated gluten free though in most people it takes a diagnosis of Celiac for people to try as GFinDC notes. Concerning your microscopic colitis check out this study that Jefferson Adams reported on at where the Canadian researchers note quoting "These findings showed a strong association between microscopic colitis and celiac disease. In fact, the diseases occurred together in the study population at rates of about 50-times those expected in the general population." As far as do you need to test again for Celiac I would say definitely YES! It just means at the time of your test (however many years ago that was) that damage to the Villi was not yet occurring. See this new research on Where they say 90+ percent of those who have NCGS will develop Celiac disease when challenged with Gluten. Sadly I don't think the article says how long that takes to happen. See new research at the link below of what/why this is and that explains the difference between a wheat allergy and NCGS.\ You may now have advanced to a Celiac diagnosis. Only another test or biopsy will tell. According to the article linked above "In celiac patients, the reaction to the gluten molecule occurs in the small intestine. In healthy people gluten passes harmlessly through the digestive system, but in people with celiac the body mistakenly mounts an immune response against the proteins found in wheat, causing extensive damage to the intestinal lining. People with suspected celiac are screened using a blood test that looks for anti-gluten antibodies. The disease is then diagnosed with an intestinal biopsy showing this damage. However, celiac patients do not have an associated spike in their blood markers indicating high immune activity. This is where NCGS patients differ. While these patients don’t show the same kind of damage when they’re given a biopsy, their blood panels tell a completely different story. This group showed a spike in blood markers associated with intestinal damage unlike anything seen in the celiac or control group. They also showed a systemic immune reaction after consuming wheat, which is a major difference from the more limited immune reaction of celiac patients." According to Dr. Mark Hyman if the serology (blood work) is positive biopsy may not be needed for his money's worth. While biopsies can be a piece of mind security he (Dr. Hyman says) that is not necessary. Quoting Dr. Hyman in the HuffPost "In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." So In summary it wouldn't hurt anything to get some blood work done and see if your antibodies are high and then get off gluten. And as he (Dr.Hyman) noted 5+ years ago quoting again "as with all illness, there is a continuum of disease" and the science is now catching up to this fact. The question is where are you on the continuum now. ONLY another blood test (and maybe biopsy) if you still think you want to go for the "gold standard" will tell but Dr. Hyman (read whole article) says it is probably not necessary today. To quote an old adage "Where there is smoke there is fire". The antibodies is the smoke the fire is the damage of the villi and according to new research on NCGS 90+ percent (noted above) do indeed burn up their Villi on a gluten challenge. And linked here again for your convenience Sadly we don't know how long that will take but we can be sure it is happening if gluten antibodies show up in the blood work. I hope this is helpful. Sorry for the long post but I covered a lot of information in this post. Good Luck on your Journey back to health. Posterboy,
  8. gluten-free andee, according to an article on that talks about this subject see this link Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet." Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being." which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order. Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs. But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
  9. babygirl6915, some people do respond more severely to gluten when they have been off of it for a while. Are you sure it is not a cross contamination issue (CC) even for those who are old hats at spotting gluten can sometimes be/get glutened by even small amount that before might of not bothered you before. I had a friend who had a similar skin rash that you describe after cheating on gluten after being off it cold stone sober for over a year and the skin rash was very severe even though he had never had a skin rash before associated with his gluten allergy. I hope this is helpful. Posterboy,
  10. Librarychick, There is a similar thread that you might want to read called "could Celiac disease really be making this sick" that similarly describes many conditions that doctor's sadly don't often connect the dots with. I recently started a survey question on this board (unscientific) that asks readers to list/answer what other diseases they were diagnosed with before they got their Celiac diagnosis. I expect a long list. mine would be GERD, IBS, thyroid, CFS, early on set Arthritis, psoriasis and I could go on . . . to name a few that all got better when I begun a gluten free diet. New research posted on explains well how you could be sub-clinical Celiac( NCGS see link) but still have many of these problems you mentioned and wheat still be the trigger. It is finally getting some respect in the medical community as a legit disease --- NCGS. And according to this new research as many as 90+ percent of NCGS (non-Celiac) sufferers could go on to develop Celiac disease in time when challenged with gluten. But there is hope everybody on this board got better when they eliminated the inflammation undigested gluten in their diet causes by going gluten free. Good luck on your journey, Posterboy,
  11. To All those who have had other disease diagnosis's before your Celiac Diagnsosis, Someone more experienced on this board might set up a poll to see how many of the tags in the thread apply to those who have received either a celiac disease or NCGS diagnosis for those who read this board. See this new research as posted on today A survey how many diseases other than Celiac disease were you diagnosed with before you received your Celiac Diagnosis? Or what other disease(s) do you also have as a result of either not being diagnosed with Celiac disease sooner or that are occurring with (Co-Morbid) with your Celiac diagnosis: A Survey/Discussion of how Co-Morbidity i.e., Pellagra might explain some of the GI problems you might be experiencing with/as a Celiac patient. I know of at least one other person on this board who has shown symptom improvement when using Niacin (best taken in the Niacinamide form) a harder to find flush free form that is often used in skin creams to treat dermatitis issues that might be confused for D.H. among Celiac sufferer’s. I was wondering if others’ have used it (Niacin in the Niacinamide form) for symptom relief for their GI problems. I find among my friends who try it they experience much better control from contamination issues once the Vitamin induces/causes them to burp. Has anyone else experienced similar results? Am I alone? Or would you be willing to try Niacinamide to see if it might cause burping and improve CC issues for you too the way it has me. If so please join the discussion and comment. Posterboy,
  12. Kam00096, I think everybody on this board feels your pain. 18 weeks seems like a long time but we all have to do what is best for ourselves. Try searching on this site for blood serology results they can be very helpful. I have included one I found in a quick 5 minutes search. Obviously it deserves more time than that. But positive serology was enough for me. Serology is often 90+ percent indicative and you have had two positive's already. I was feeling at my worst and had no doubt gluten was the cause and have gotten better everyday since. No one can decide but you what is best for you we can only offer advice and share our stories. A compromise that might work in this case is a low carb diet. It should help bloating from poorly digested carbs in the diet. Also low carb does not mean gluten free. You should still have enough gluten in a low carb diet to trigger poor compliance. Most gluten antibodies go down in that time so I wouldn't go completely gluten free for sure but less gluten is always a good thing if you think (know positive blood test) is a problem for you and you have decided to hold out for the biopsy. You might try spelt. This article covers why spelt my be a good low gluten alternative. I hope this is helpful and good luck on your journey. For the fatigue and energy issues ***** this is not medical advice but I have said this elsewhere on this board 100% Magnesium CITRATE is amazing for chronic fatigue since I began taking it 200mg 3/daily with each meal I have not had fatigue issues since. At one time I even took 3/day plus 1 hour before bedtime for restful dreams but do not need it that often anymore. It will be harder to find the CITRATE form but your body will thank you for it with much higher energy levels. And yes gluten can cause all these symptom's you mention and why they call it the "iceberg" disease/diagnosis because up to 20 other disease are associated some strongly some only occurring with a diagnosis. Posterboy,
  13. tracym007, I think I mentioned this in another thread post. And why I mentioned the Niacin(amide) version for your lotion. Most people do not know there is actually two types of Vitamin B3. Niacin and the Amide version (non flushing) Niacinamide. B vitamins often help with stress. Vitamin B3 helps regulate histamine (think what cause's us to itch) release's in the body and why people flush with the Niacin form but do not with the amide Niacinamide form. You can also purchase Slo-Niacin bound to Inositol limiting any flushing. I mentioned the Niacinamide form because it known to help skin issues when applied in a cream. My local vitamin store has it on standby by order of the dermatologist because when the capsules are mixed in lotions it work 15% percent better than many prescriptions for roseas, acne, and psoriasas etc. Be sure to titrate (step up in smaller doses) to 250 mg Niacin either using 100mg or 50 mg dosages. Doubling with each additional dose. Niacin is widely available in larger doses but at higher levels can cause an irritating (but natural) flushing (Hives) for the first two to three days of taking higher dose Niacin. Doctor's tell people at higher dosages (the 250 or 500mg) widely available to take it at night when going to bed and sometimes with Vitamin C I think to limit the flushing affect. Interesting enough if under a lot of stress Niacin will not flush if your stress is high enough to need that amount of Niacin. So the flush/hives is actually a natural healthy response but the Niacinamide form does not cause this affect but all the benefits of Vitamin B3 is maintained such as the help with the rash you are experiencing after only a short time (3 to 4 months) using Niacin. I just wanted you to know to expect it (flushing when using Niacin) so as to not think you are "allergic" to the vitamin as some people describe it as when they take Niacin in higher dosages not knowing this can happen. Dr. Myill of the UK says it very well "Niacinamide a little Vitamin the mitochondria (my words/we/the cell/) "must have" to function properly Some doctor's get that Pellagra can still be found today but sadly few are looking for it. Even doctor's of medicine teach Pellagra is not a "Disease of Today" so when they see (rashes etc, dementia (brain fog knitty kitty mentioned) etc it too often is not recognized in a clinical setting. I say it is time for a Time for a Vitamin Reformation and admit the war on Pellagra is not over as Dr. Heaney suggested. It has just gone underground. It should be noted with B-Vitamins as Knitty Kitty takes Niacin more frequent is better. Beeing water soluble B vitamins should be taking through out the the day for best affect. With meals and snacks as Knitty Kitty does works best. 2/day works twice as fast. 3/day works 3 times as fast once a day. You get the idea. I hope this is helpful. *** this is not medical advice just my own personal experience like Knitty Kitty from research and having tried it myself. I tell those who will listen. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” See my profile and visit the website there if want to study more about how like Knitty Kitty it helped my comobrid Pellagra greatly improve my health in about 6 months of taking Niacinamide. Then tell someone else like we are telling you Niacin(amide) can greatly help if your are a Celiac patient who also has developed Pellagra. Posterboy,
  14. at wits end with this rash, Do you also have GI problems or has this rash preceded any GI issues (regular once a day). I did a quick search on and came up with this thread on the topic. I think it is very informative. Also have you tried a skin cream with Niacinamide in it. They can be hard to find. I am not recommending their brand and have not tried it but Receuticals sold at Rite aid especially step 3 has Niacinamide as its active ingredient. Niacinamide helps regulate histamine releases in the skin triggering the itching you are experiencing. It would be much cheaper to just buy a bottle of Niacinamide in capsules and mix into your current lotions to see if helps any. Just a thought. My local dermatitis has a standing order at my local vitamin store he so commonly recommends the stuff to his patients. Good luck on your journey. It worth noting that in the thread I found on he said (the commenter) said a itch sufferer of DH that his skin issues showed up 5 years before his Celiac diagnosis perhaps this what is happening to you. But I would try rubbing niacinamide into any of your creams/lotions you are using for now to see if it helps. Posterboy,
  15. manasota, When I first was diagnosed with Celaic disease I was beginning to have Thyroid problems. But I began studying up fortifying myself with knowledge which led me to Chris Kresser's site where he has a free book on Thyroid disorders it might be worth downloading it and reading it (I have not) but read some of his blog posts. I think of it like one of my fellow blogger's I follow Susan Hughes Healthy by Nature quoting when she says "I find the human body to be pretty amazing. It is capable of healing itself when given the proper tools to do so. These “tools” include nutrients, thoughts, rest, among other things – all dependent, to a degree, on the unique needs of the individual. Many times proof of this incredible healing capacity of the body is backed only by anecdotal evidence, which, no matter how valid, lacks the respect that formal research supporting this notion would receive." With that in mind consider what I have learned on my journey is all I ask. I will share what has made me feel better. Chris Kresser (I don't remember why) says selenium first then Iodine for thyroid problems and a lot of these fatigue issues can be tied to your thyroid. Having said that my thyroid is better by that I mean I no longer need meds for my thyroid and my chronic fatigue is better. I find two or three brazil nuts a day will give you most of the selenium your thyrorid needs. Find a Kelp supplement for a good source of Iodine or just start putting idoine (betadine) from the drug store on your legs each night until it stains you in the morning then you know your body has enough Iodine since it readily absorbed when it lingers on the skin for more than 12 hours you have enough iodine. For the Chronic Fatigue I can not over emphasize Magnesium CITRATE in divided doses 3 to 4 times (with each meal and at bed time). Great book on the subject called "the Magnesium Miracle". Make sure it is a 100% Citrate though or your body will have time absorbing it. Your energy will really perk up. Muscle cramps will improve. Restful dreams (if you can't remember when you last dreamed) will come vividly. Search for the posterboy on this site if you want to read all my posts and see my profile if you want to know what other vitamin's or minerals I have taken to help me "get well". Good luck on your journey. Read the topic "Still Sick 1 year after diagnosis" for a summary of other things I have done by the poster ryan7194. Provided here for easy reference **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. 2 Timothy 2:7 and 2 Cor 1: 3,4 Posterboy,