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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 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.

Posterboy

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  1. Ryan7194, Timeline and history are important with diagnosing someone in any condition. 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.  http://www.drugs.com/mtm/metamucil.html You do not have to trouble swallowing to have an allergic reaction to Pysillium (Metabmucil) I did so I stopped promptly but if these thing like nausea, stomach problems etc more have gone on for more than 2 weeks and they have for more than 2 months (according to you) I suggest you stop the Pysillium immediately. **************  This is not medical advice and should not be considered such but elimination diets are often a safe and effective way to find what your body is reacting to. This only has been my personal experience and why I am able to offer personal advice and feedback base on my own experiences and study. The bloating seems an obvious carbohydrate problem to me.  See Chris Kresser who know's alot about why we often feel bloated.  Carbs are usually the trigger for bloating according to him.  Consider going low carb to help the bloating if stopping Metamucil does not help.  It usually helps people who are having heartburn problems to remove their triggers and according to Chris Kresser carbs are the biggest offenders. http://chriskresser.com/the-hidden-causes-of-heartburn-and-gerd/ This the middle article in a 3 part series that is very informative you probably should read them all. Also see my archived blog entry.  Make sure you find the Niacinamide form of Vitamin B3 or Slo-Niacin because straight up Niacin will cause flushing in most people in high doses of greater than 100mg but can be titrated up in 100mg doses if Niacinamide is not easy to find in your area.  Most doctor's who prescribe it (Niacin) prescribe it for cholesterol support tell you to take it a night.  If you do take Niacin because you have trouble finding NIACINAMIDE be aware it will cause flushing for 3 or 4 days until your histamine reserve's are flushed out.  It is not uncommon to wake up the first night from hives with Niacin in doses above 100mg but this is not a problem for the Niacin(amide) form.  Being a water soluble vitamin 3/day works thrice as fast as once a day. Eating it with food provides a easy way to remember to take both it (Niacinamide  and the Magnesium Citrate) I mentioned in an earlier post.   You will now it (Niacinamide) is working when you begin BURPING for the first time in years (not soda or beer, ie carbonated drinks) see my celiac.com blog entry below for more information. I think these two things will really help.  See my previous comment's about the Magnesium Citrate for Fatigue.  You can also check out the website in my profile if you want to read more about my history as I often say "To Educate is to Free". Good luck on your journey, and let us know if it was the Metamucil and if the Niacinamide helped in 3 to 4 months (causing burping) the time is usually takes to see a significant improvement in stomach issues.  The Magnesium Citrate (low energy) will work in 3 to 4 weeks if the fatigue is due to being low in Magnesium. It can't hurt as they say.  It is just one Vitamin and one Mineral. You may want to wait until you get your SIBO results before beginning these vitamins/nutrients so as not to interview with any tests you might have to perform for your doctor.  But personally this is just me talking one Sufferer to another Sufferer I would stop the Metamucil YESTERDAY as they say.  If it is Metamucil causing a a relapse then the affect should be almost an immediate improvement in 2 weeks to a month or less. ******** Again let me say for emphasis this not Medical advice.  Please let your doctor know of any changes in your routine including stopping the Metamucil so he can include it in your timeline for a proper diagnosis. Also consider the STRESS you might be under it is not uncommon for Stress to make us sick and we often don't consider it at the time.  Think High Blood pressure from too much stress! 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy,      
  2. ryan1794, Have you considered the medicine's you are taking.  Some medicines and antibiotics can give you "sprue like symptom's" ie mimic Celiac disease's often alternating with the C and D you describe.  But with your anti-bodies test presumably still being low Gluten is not the trigger in this case but the medicine you might be taking could be. See this link on glutino that is a couple years old now but describes it very well.  http://www.glutino.com/blog/medication-causes-sprue-like-symptoms/ And see http://www.drugwatch.com/benicar/ for more on how Benicar can cause the symptom's you describe if you are taking it for high blood pressure FYI and your doctor's if it has not been mentioned to him before. Also consider changing any pain medicine you are taking to another NSAID or possibly a coated aspirin instead of a Ibuprofen branded (Advil or Motrin) pain medicine and see if it helps your GI problems. According to the http://www.dailymail.co.uk/health/article-2610158/Is-ibuprofen-making-sick-Research-suggests-cause-coeliac-disease.htm it might  also cause some of the symptom's you are describing. I do a lot of nutrition research myself and I don't think this fact is well known ( and why would they want it known) or people would probably stop taking it or at least (Celiacs's would) find another medicine substitute that would work with out causing unknown (to most) GI distress! I know I did not know about til about a month ago.  Share if it helps is all I ask. Search for the Posteboy on Celiac.com to see all my comments and if you find this information helpful share.  Pay it forward and pass it on. 2 Timothy 2:7 I  hope this is helpful. Posterboy,        
  3. ryan7194, I agree with cycylinglday I noted/noticed the same thing.  See my comments to liz21 topic " 7 year, 5 years gluten free . . . still having problems" and my profile if you want to know more about the posterboy. That said I wanted to share my experience with Chronic Fatigue that presented before my Celiac diagnosis.  Triggered by not being able to absorb critical nutrients like Magnesium. Being a Celiac your ability to absorb critical nutrients (as I sure you are aware by now) is compromised and limited in many respects. I used to sleep 12 hours a day and still I was wore out until .  . . I found out about the Miracle of Magnesium!  There is a book call just that "The Magnesium Miracle" that talk's about all the benefit's one gets from taking Magnesium.  YOu dont' need to read the book to get the benefits just find the right form is the key. Find a Magnesium CITRATE take it with each meal and at bedtime and you will be amazed about how much your energy levels increase. If yous start having vivid dreams after a couple of weeks and waking up before the alarm clock goes off it is the Magnesium working. Friends at work swear by it for cramps and charlie horse's who have tried and found a citrate form.  They no longer wake up in the night and sleep soundly.  Magnesium should really help the fatigue you have been experiencing or at  least it did mine.  I hope you find out what is causing your flareups.  Find a CITRATE not oxide then your body will really respond. *****  This is not medical advice. Good luck on your journey.  If it don't work in the first couple of  weeks (produce restful dreams and help fatigue) look at the label to make sure you have gotten a 100% Citrate form. Would Love to hear if it helps your fatigue either way good luck. Posterboy,
  4. StephanieL, I have/had Celiac diease.  It was not a wheat allergy and I know it technically not right to say "allergy" in this sense.  It is a delayed autoimmune reaction that produces antibodies and yes I had them that immediately went down in the first month on a gluten free diet. Probably the worst week(s) of my life physically (terrible chronic fatigue and arthritis at an early age less than 30) literally having to drag my self out of bed and falling asleep setting up just so I could confirm what the doctor's needed for their test's waiting all week to find the antibodies were  "off the charts" as they say  all the while still eating gluten knowing in my body, heart and soul it was killing me. My health has improved drastically since I first went on a strict gluten free diet but even then after a year or two I still had "glutening episode's" and know of other other Celiac's who have had the same experience. As their body healed even trace amounts of gluten would/does bother them when in the beginning seemingly being able to "cheat"  a little without have the very serious reactions that seem to progress the longer they went from having cut gluten entirely out of my/their diet(s). It was to the point I just wouldn't eat out of my gluten free home.  I alway's had to take my "Gluten Free" foods when I would visit someone or eat strictly naturally gluten free options like meats and vegetables because I never could be sure the broth or something else didn't have trace amount of gluten in them or even chili didn't have some thickening agent's in them etc and etc that would set off my "gluten allergy" ie Celiac disease. But today there are so many more dedicated gluten free options that in someway's it easier than it was . . . . but alas we know that only last's till we get glutened again. I still remember vividly eating "Bak** on M**N gluten free granola (an early dedicated gluten free product)  and having a severe glutening episode and that is the last time I ever ate their product's. Think the same problem gluten-free Cheerio's has had recently. See my profile for more information about me.  I do feel for Liz21.  It is not easy at any age to be told you can't eat this (medically speaking) but I resolved if I knew what to avoid I could do it and did most of the time.  Every time I would be/get glutened again I would go back to the drawing board so to speak and figure out again where I had missed the gluten. I do notice if my Stress is worse I sometimes have flare ups and there is not an obvious source of gluten.  Maybe stress is part of it I don't know for sure.  Probably most of us have had flare ups and we weren't always sure why it happened. I will say Not only did my fatigue get better after the celiac diagnosis but my arthritis did too when I found out about Magnesium.  The stuff is wonderful when you find a good 100 percent Magnesium CITRATE form.  I  haven't been fatigued since. **** This is not medical advice Jefferson Adams on Celiac.com reported Stress is common before a diagnosis maybe it is still common too when people have flareups?  As Jefferson Adams summarized "life events may impact the clinical appearance of Celiac disease or accelerate its diagnosis" it seem reasonable it might also affect flareups after diagnosis? http://www.celiac.com/articles/23506/1/Stress-Common-Before-Celiac-Diagnosis/Page1.html I hope this is helpful. Posterboy,
  5. cycylinglady, I did not say Niacin. 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.  Folic Acid usually helps people with high blood pressure and 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. *** this is not medical advice. Posterboy,
  6. cyclinglady and Celiac Nutritionist You are right I was mainly referring to the fact that many more gluten-free people are not truly as gluten free as the sometimes think they are. Jefferson Adams wrote about  this new research on celiac.com http://www.celiac.com/articles/24200/1/How-Are-Gluten-Immunogenic-Peptides-Like-Santa-Claus/Page1.html I also reacted to the search results when I found this article  7 years old, 5 years gluten free still having problems on bing search but only listed as two years on google for the same search results (maybe not long enough to be refractory) but I went and looked back at liz21 description and she said 5 years gluten free long enough to begin considering if it possibly is refractory in nature. Timeline is important I agree with "Celiac Nutritionist" how often is this glutening occuring?  Once a month or once a week etc.  There seems to be some unknown gluten source but liz21 said she had her son on a strict gluten free diet so I thought after 5 years it might worth mentioning more celiac's have background gluten than they often are aware of often. I agree with the "Celiac Nutritionist" check your supplements. It is not uncommon to be taking medicine's with gluten in them and often we don't stop to consider that these things would be contaminated with gluten. Scott Adams has a great summary on this topic.  The info is a little old but probably is still true according to him almost 1 in 5 (18%) can be refractory.  This assumes a 2 year burn in period or as he terms it "Non-Responsive Celiac Disease". http://www.celiac.com/articles/741/1/Causes-of-Non-responsive-Celiac-Disease---More-than-50-Continue-to-Ingest-Gluten-Unknowingly/Page1.html I will offer this timeline for you liz21 (and anyone who has been accidently glutened) it was always 18 to 20 hours after the waiter took the croutons of my salad thank's O'Ch*****'s that I had that glutened feeling of a four star day of staying near a bathroom. Liz21, for what it's worth my gluten allergy got much more sensitive after two years of being gluten free. Less and less bothered me more and more and that sounds like what is happening to your son too! Galatians 5:9 A little leaven (gluten) leaveneth (ruins) the whole lump (meal). Do what the cycylinglady suggests and have your doctor recheck your son's antibodies with a simple blood test's and you can go from there + plus recheck for any gluten sources outside the home.  Or inside the home if you home is not a 100% gluten free home consider trying it for your son's sake even toaster's can cross contaminate as an example. If you think it could be thyroid related simply check his normal body temperature more than 0.5 + or - difference could indicate an undiagnosed thyroid problem. ***** this is not medical advice please always consult your doctor before making any changes. Good luck on your journey, Posterboy,    
  7. You may not be gluten free as you think.  See my profile.  Try some Niacinamide.  A healthy child burps!  A sign of complete digestion.  It (niacinamide) can be used topically (rubbed into creams) for the skin dryness. Most dermatologist know about this. INgest orally 1 large 300 count bottle  should cause burping to occur and digestion to improve.  Once burping begins his stool will sink to the bottom indicating healthy digestion. Look up http://www.kait8.com/story/30703340/celimmune-co-authors-study-demonstrating-gluten-peptides-in-urine-correlate-with-mucosal-damage-in-celiac-disease He may refractory celiac disease.  almost half of people on gluten-free diet's have gluten peptides in their urine according to this study. Posterboy,
  8. I actually think gluten triggered my type II diabetes.  If I was first diagnosed with Celiac Disease I wonder if I would have developed pre-diabetes in the first place.   Nevertheless nutriiton has helped me keep my sugars underway after going gluten free.  My a1c often would go over 7.5 without  metformin.  Once I took some Chromium Polynicotate to help my insulin work better my sugar routinely are a whole point lower.   After only taking it for a couple of months my points starting dropping to a more normal range.   Always be careful before taking any supplement to read up on it side affects.  I chose Chromium Poly because it seemed to be safer than Chromium Picolinate.   I hope it helps.  I know it helped my blood sugars.   This is not medical advice only my personal experience.  Please check with your doctor before taking any supplements to see if he approves.  But my specialist thought it might be a good idea and is happy with my results and so far I haven't had to take the metformin as of yet for my blood sugar despite being treated for type II diabetes.  I credit the Chromium but who knows it might of been coincidenc since I begin watching my carbs and diet too with the gluten allergy.   Posterboy,
  9. Still Showing Damage,   Biopsy are the old school way to test for gluten free dietary compliance.  The villi however take most people 1 year approx to heal the majority of the way.  2 years are needed for most people(if no cheating occurs hence the 2nd biopsy) for complete remission.  If the Celiac is not in remission in 2 years it is consider refractory (non-healing) type.   Blood serology in the short term 1-6 months are much easier and possibly more accurate with gluten antibodies going down dramaticlly with in one month.  It sounds like a blood exam was called for here.  At 6 months if you are adhering to strict gluten-free diet most all the remaingin antibodies for gluten go away.   See above how villi healing takes twice to four times as long to heal to pass biopsy (gold standard) for Celiac Disease.   But if there is no gluten and/or ie antibodies the body will begin to heal as soon as a month as evidenced by the dramatic drop in blood (serology) antibodies indicate by a 2nd follow up blood panel.   Posterboy,
  10. I found this link that summarizes it very well.  Buyer beware.   But other articles I read seemed to indicated maybe a NCGS patient might be able to tolerate some well seasoned sourdoughs, ie that had been allowed to grow for 24 hours to help predigest the gluten into smaller more managable peptides by the body (only theory on my part).   http://celiacdisease.about.com/b/2011/01/31/hydrolyzed-wheat-flour-study-details-reveal-potential-problems-for-celiacs.htm   I wonder the same thing about the Ezikel bread's.  Some of my friends say they can 'eat a little' but still it is possible I suppose that sourdough might have less gluten content if prepared correctly meaning at leat 24 hours of seasonging.   I remember when I first starte gluten-free that in the begining I thought I could eat a little but after 6 months I found any wheat of any kind was too much.   This might be the same affect here.   There is been some talk recently in the media that the fast rising portion of modern breads creates unusally high gluten levels to remain in the bread unlike more traditional methods used today.   See the motherjones article for more information http://www.motherjones.com/tom-philpott/2014/02/toms-kitchen-100-whole-wheat-bread-doesnt-suck-and-pretty-easy   I think I mght be to scared to try.  It is interesting to read abouth though.  They say modern society is killing us?   Maybe their are right if we are gluten inloterant.   I think I would stick with Udi's.  Great gluten free bread.  The first I tasted that didn't taste lke the box it came in.     Posterboy,
  11. My post is pink (I have trouble with colors) I think what does that mean?   Will I get a notice if the post is approved?   Does that mean the 'moderator' has not reviewed my post yet?   Posterboy,
  12.   Pat,   In response to the Chronic Prostatitis,   I have had friends mostly women who have had either UTI's or Kidney infections and almost 90+ of the time D-Mannose wiped it out.   It is just a simple sugar but really works wonders on E. Coli infections by the E.coli attaching to the sugar and being harmless flushed out of your system.   If your prostatitis is caused by E. Coli (as I understand most are according to Medscpape) it should do wonders for it.   A low grade version is available as drink under the Cystex Brand from Walgreens.   You may need a full strength version available at most vitamin stores to start with then use the Cystex as a preventable.   As for the GI symptoms you have been having see my previous post or see my profile.   Good luck on the your journey.   See the medscape article provide for information only http://www.medscape.com/viewarticle/412693_3    This is not medical advice just my own personal judgment.  Always consult a doctor before making any changes but it is certainly couldn't hurt much.   It is commonly found in Melons (Canteloupes) as an example.   Posterboy,
  13. gluteymommy,   I sympathize.   See my profile   Then follow this regimen if I am right you will see improvement in 6 months.   It is just one vitamin and one mineral.   Magnesium Citrate will help the fatigue, insomnia and give you restful dreams.   Niacin(amide) - harder to find than Niacin but flush free/slow niacin will do the same.  There are two forms of B3 the flushing kind Niacin and Niacinamide which doesn't flush.   Vitamin Shoppe sells a big bottle of 300 for $20.   I studied for 4+ years before I began to understand the heart of my problems was nutrition related.   A healthy baby burps and a healthy adult should.  It takes the first six months of a babies life to burp . . then we know he is a healthy growing boy/or girl.   Your child might be colicly because this B vitamin deficiency can be passed from mom to child the way it inherited from my mom.   35+ years later I begin to diligently apply myself to see if I could figure what had been dogging me all these years and in 6 months of megadosing  with 250/500mg Niacinamide I became regular and have been since.   B vitamins being water soluble need to be taken frequently for best affect.  Certainly once a day will get the same result but it won't happen as quickly.  I reccommend 2/day to start but it completely safe to take 250/500 (which ever is easier to obtain) with each meal and at bed time.  The key is to take it until burping.   I no longer take the Niacin but still continue and always will take the Magnesium.  Their is a great book called the "The Miracle of Magnesium" in my opinion the cause of most cfs and sleep problems.   Once you are burping like a cow chews cud after every meal and you are taking the magnesium citrate 200mg 3/daily I think you will feel 200 percent better.   It is called Pellagra once thought cured 75 years ago but still prevelant in over 10% of the population.   3 d's of Pellagra   Dementia Issues (anxiety, depression, etc) Digestive Disorder(s) Constipation Diarrhea etc Dermatitis issues - acne, rosea, dh etc   Once you are regular once a day you can try the vitamin d again (salmon is a good source) the fat souble component is causing the issues.   Start a good B Complex for stress then depending on what else is still bothering you you can research other mineral or vtiamin deficienies you may have that Celiacs are prone to.   Certainly this vitamin and mineral alone will not fix "all" your problems but they can reset your energy and digestive balance giving you a fighting chance at recovery   Posterboy,
  14.     J. Podi,   I did much research like your self and continue to research these questions you pose.   Let me first refer you to Jane Anderson on About.com Refratory Celiac Disease: Frightening but very, very rare then let me add my two cents.  She goes one to say in her linked article that it occurs in less than two percent of Celiac sufferers.   So yes Villi does heal and often very rapidly.  Think a shag carpet once left alone often returns to normal especially if you 'fluff' it up with your hand.   Someone already mentioned this in the blog.  Glutamine is know to essentially do that helping the intestional lining to recover more easily.   I am not a doctor and this is not medical advice but from my research 2 years is a normal recovery time.    But most people begin to see tangible results in as little 1 month unless background 'hidden' gluten has not been eliminated like some innoccous sounding as malt as an example which an old celiac knows is a barley (gluten source) product unless it has an adjective in it like Corn Malt etc.  Just one of many examples you will have to read up on or learn by trial and error or become an excellent label reader.   This means NO cheating which mean probably not eating out much either.  Even accidental exposures can trigger this auto-immune reaction.     Think of a coral reef when healthy the whole sea is healthy when bleached "villi" all the host fish communities die out too but the good news you have an easily managed problem now that you are aware of what to avoid.   While not easily when eating processed foods easy enough when you cook yourself . . . Gluten need never bother you again.   I hope this is helpful.   Posterboy, 
  15. I was/had been gluten free for 4 years. I have heard that (maybe urban myth) that gluten doesn't bother me anymore. How do I know gluten is bothering me again before it is too late? I am still regular even when I ingest gluten accidently or can't resist cheating. All I can think is my gluten allergy has gone away. Is this possible? Or am I just pressing my luck for I relapse in to gluten sensitivity again, Posterboy,