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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This 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 email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About TTNOGluten

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    1. TTNOGluten added a post in a topic How Many Of Us Assume A Gfd Will Fix It?   

      I worded that previous post wrong, I meant to say it feels like someone putting their fist through my upper belly into my midback, not my butt, it extends right along the rib cage on the right. I have had a look at my back as the source which was unremarkable with exception of slight thoracic deg. disc at age 42. They even tried to do some steroid back injections with no improvement on three different sets of injections. It feels like it is coming through my gut and then making my midback and ribs very painful. I have even questioned the GI doc about sphincter of Oddi dysfunction, but he say no as my labs are normal. The sucky thing is that almost all pain meds give me such a headache like a bad hangover that it is not worth it to stay on them, or at least I have not been able to find anything to give me relief
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    2. TTNOGluten added a post in a topic How Many Of Us Assume A Gfd Will Fix It?   

      I really do not eat any spicy or acidic foods, I have had PH probe testing acid and they say everything is fine, this doesnt really burn , it is like someone is putting their fist in my but and I have extreme mid back pain into my right flank, gallbladder is out, last EGD 6 months ago they say is OK, pain is incredible, constant, relentless pressure twisting sensation. Worse than 16 broken bones that I have had in my life, if that puts it at a level. No diarrhea, bowels pretty normal, doesn't feel like a crampy upset stomach
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    3. TTNOGluten added a post in a topic How Many Of Us Assume A Gfd Will Fix It?   

      I have not posted anything in quite awhile, I guess I just need to vent again. I am have been looking for that miracle of health for 1 1/2 years and according to Gi doc, he really doesnt know why I feel no better. I have been strictly gluten free for this time frame, and according to my last few sets of labs my TTG Iga has been back to normal and my biopsies are normal, at best the only thing that has improved is maybe some bloating, but I still have 24/7 deep aching in my upper adbomen that feels like a constant knot. It hurts so bad that most days I have a hard time functioning and maintaining my job, and pain radiating straight through into my back, and now daily joint pain. Almost feels like someone is pushing their fist into my upper gut or twisting it??
      Anyone else with these symptoms? My bloating seems to intensify at times, but the pain in relentless. I have had nearly every scan, xray, 24 hour probe etc. and find it hard to believe that it is related to food ingestion of other intolerances as when I limit them or stop them, it never goes away, it is almost like my gut is permanently damaged, but according to EGD it has healed on biopsy and labs are normal??
      I don't get it at all. Still desperate for any type of answer.
      Any input would again be helpful? I can't honestly somedays imagine that I can continue to live like this for much longer
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    4. TTNOGluten added a post in a topic Intestinal Pain Radiating/referred Pain To Back Pain?   

      I have not been taking either. Guess I have been reluctant to add another variable to the mix, maybe it is something I should consider, honestly most days I feel so ill I have a hard time even thinking. I guess I am frustrated with why this has been such a long process, especially if my celiac disease according to the GI doc has healed.
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    5. TTNOGluten added a post in a topic Intestinal Pain Radiating/referred Pain To Back Pain?   

      I have not posted for some time out of frustration with my ongoing issues. I have been gluten free now for over a year with virtually no improvement in any of my symptoms with the exception of bloating and belching. My pain from day one has been through into my mid back and around into my rib cage, even in the past year prompting my gallbladder removal and a recent exploratory surgery. I am also developing joint pain in the knees and hands, but the mid back pain is crippling. Everyday I feel like I have the worlds worst hangover with a headache, severe malaise and slight nausea and disabling fatigue, yet I cannot sleep worth a damn. To my knowledge I am not getting cross contaminated, and really doubt that it is related to this as I really have never felt well even after starting a gluten free diet. In addition all of my markers TTG, and biopsy have returned to normal according to GI doc. I have a positive ANA 1 :160 titer, but they feel this is just incidental. Many days like today I literally feel as if I am going to die, and it scares me to think my wife will end up finding me dead somewhere. I have exhausted nearly every option I can think of, my GI doc is "an expert" in celiac disease and has no explanation as to why I still have horrendous pain. Maybe celiac disease does permanent damage to your spine and joints? I figured I would be better by now.
      Anyone else have any similar story or answers?? I just want my life back so badly and am barely hanging on by a thread.
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    6. TTNOGluten added a post in a topic Frustration To The Max   

      Sometimes when I read these responses I get a little choked up as corny as it sounds. I cant believe the outporing of help and suggestions that come from many of you who have walked a similar path. It is a lonely place to live many days, sometimes I think I am being punished somehow for my youthful stupidity. thankfully I am blessed with a wife that is a rock and two great kids that have pulled me through this kickin and screaming.
      I found it interesting about the rheum studies as well with the positive ANA, I also have a HLA-B27 marker, and have thought about anklylosing spodylitis, but the docs I have seen don't think this is the issue. Seems like my muscles in my back are a disaster and around into my flanks especially on the right. Maybe I should try a paleo type diet to see, I know it will be a struggle, as I do eat alot of variety, but maybe worth a shot.
      Sorry for whining, but this just sucks!!!! Last year I was doing daily p90x workouts and running 2-3 miles every other day, this year I am running to the bathroom cause I feel like I am going to Yak all the time and in pain. Hard to believe honestly! I struggle admittedly with accepting this change in my life
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    7. TTNOGluten added a post in a topic Frustration To The Max   

      My home is as gluten free as I could possibly imagine it being, I have different toothpaste, soap, utensils, different grill. I cross reference all my own meds as does my pharamacist. No pets, had to put dog down last year, never smoked, drink very little other than water or almond milk, once a month I will have a gluten free beer but can only handle about 1-2 max. I know sounds like a boring life, but I am desperately trying everything in my power to deal and find this out, I am trying to stay proactive, but am feeling defeated after a never ending battle with this pain. I hate the thought of taking pain meds with a passion, but at least some days I can pseudo function and try to enjoy my family. I am convinced that I have some type of auto immune process, its just that I nor anyone else seems to be able to figure it out and provide any guidance or hope for improvement.
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    8. TTNOGluten added a topic in Celiac Disease - Coping With   

      Frustration To The Max
      I have not posted with the exception of yesterday in quite some time, mostly out of my own frustration and battling some of my ongoing demons. I found quite honestly with my lack of improvement that I was getting depressed reading all of the posts about the debilitating nature of this disease. In the past year my life has been stolen, going from an active guy who exercised daily, father of two, never taking any meds, with a busy active life, to dealing with chronic abdominal pain, intractable pain in my back and ribs, nausea, and feeling like I have the flu everyday 24/7. I have been gluten free for nearly 10-11 months, my labs have normalized and my biopsies after 4 EGD's are back to normal. I have had more tests and even my gallbladder taken out because of this abdominal pain yet no resolve. I have hunted for every food intolerance imaginable, but realize my pain is constant and never resolves regardless of what I eat excluding gluten of course. I know I am not cross contaminated as it is constant with zero improvement from day 1 with the exception of bloating only. Pain now requires me to use pain meds daily to function, multiple well respected GI docs have no explanation for the pain, MRI's, cat scan's reveals nothing and all labs have been stone normal except an ANA test, although rheumotologist is not convinced that I have a rheumatologic process that is casuing this.
      So after all ramble, I guess I am curious to know if some folks are just stuck feeling indefinite symptoms, even though the GI doc says all is healed and this is not extra-intestinal manifestations of celiac. Maybe I am jsut stuck living like this with chronic abdominal pain and being in misery everyday. Hard to believe, but I am at a loss. quite frankly tired of trying this supplement and that with no consistent improvement, maybe this is what chronic pain does to someone, is make you a grump ass after a while and makes you lose all hope, because that is where I am at. Quite honestly, when I look back at things it makes me wonder if celiac disease is just an incidental finding, or does it really do all this to someone and really never improve clinically although biopsies and labs are now normal??
      • 11 replies
    9. TTNOGluten added a post in a topic Abdominal Pain   

      I have not posted in quite some time out of frustration, mostly because I have been depressed about my situation and lack of improvement. I have been gluten free for nearly a year, and have had more tests than humanly possible in one year, including 4 EGD's, my biopsies and labs have normalized more than 6 months ago, yet I have been left with persistent 24/7 abdominal pain in the epigastric region that radiates into my back and right rib cage. I have been to some of the most respected Gi docs, and they have absolutely no explanation for my constant pain. Even after having my gallbladder out, the pain is constant. I now live a life of existence. Last year prior to the start of this I was quite possibly one of the healthiest guys I know, and didn't take so much as an occasional motrin. Now I am on chronic narcotics to function and continue to work and take care of my kids, and they just barely take the edge off. I have constant pain, and no it is not cross contamination, it is constant everyday of my life every minute of every day, day and night, with completely now normal labs and biopsies. I have modified my diet from every conceivable fashion, including lactose, you name it and not a stitch of improvement. So I feel your pain, I wish to god someone had any insight into this, as my life has basically been ruined and there are many days when I wonder if I am going to make it. I cannot imagine that my body will hold up for another year feeling like this
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    10. TTNOGluten added a post in a topic Gluten-Free Diet Repaired Gut, But Celiac Disease Symptoms Continue   

      Boy do we ever have a similar story. I have been on a 8 month quest to define my illness after previously being perfectly well until august 9th, 2011, then got ill and have not right since. I think I have had virtually every conceivable test and have three docs daignose me with celiac disease including four biopsies and labs, one loacal, two a Mayo clinic and one at univ of michigan. I have had my gallbladder out in 12/2011, had MRI's, cat scans, impedance and PH probes and have no acid tests, had food allergies to casein but eliminating did not improve symptoms, had a pet scan looking for cancer, MRI of brain, c-spine and thoracic spine and innumerable studies looking for parasites, stool studies and pancreatic tests. Most recently after bring gluten free for 6months my biopsies are normal and all celiac labs are normal. yeah that is great...... but I feel terrible everyday!!!!! I have virtually constant epigastric pain, still frequent nausea, tremendous pain into my back and rib cage everyday requiring pain meds to be able to even function(and yes I suffered for 5 months without them and cannot take the pain anymore). I feel like I am drunk every morning when I wake for at least 4 hours and foggy headed with a shaky out of body feeling that then improves slightly in the afternoon. And despite being "normal" on my biopsies and labs, I am far from normal, as a matter of fact I am no better than when I started on august 9th. I was perfect before, no dairy problem, no gluten problem and am 41 y/o then overnight bang sick!!! I have no explanation nor do 7 different docs including rheumatologist, endocrinologist, infectious disease, PMR doc, and 3 gastroenterologists. I wish someone would indeed explain why symptoms persist despite being intestinally healed supposedly. Trust I have looked at virtually everything I can think of. I am so frustrated I could puke and tired of having my life stripped away by this bulls...! If anyone feels the same, please chime in
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    11. TTNOGluten added a post in a topic So Sick, Went To Doc   


      Your symptoms sound very suspicious for hyperparathyroidism. It is frequently missed by many docs due to fluctuations in your calcium levels and not putting the whole picture together. Do yourself a favor a go on and read Dr. Norman's site info, he is the world's foremost expert on this. I think it would be worth your time. Best of of luck
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    12. TTNOGluten added a post in a topic Calling On All Veteran Celiac Posters   

      I have removed the dairy(casien) from my diet as well. NO real change
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    13. TTNOGluten added a topic in Celiac Disease - Coping With   

      Calling On All Veteran Celiac Posters
      Well the past few weeks have been interesting for some new diagnostic studies, was hoping that all the veteran celiac folks could shed some insight. I have been seeing a gastro for 2 months now who I really like, he takes time and is very thorough. I had another EGD 2 weeks ago and an entire battery of celiac labs completed again, which shows normal biopsies and all may labs having retruned to normal, including TTG Iga, Igg, antigliadin Iga, Igg, and deamidated gliadin. This is all good news, obviously as he states I am remaining gluten free to see this improvement, however I still get many of the same symptoms everday. Pretty much continous epigasttri gnawing with slight nausea, constant pain into my rib cage on the right and midback, and occaaionally on the left, and still frequent bloating and burping???

      Gallbladder is out as of Dec. 13th, showed chronic cholecystitis. Limiting much of the processed foods, also have casein allergy, which I have removed from my diet, if it does slip in it is very infrequent. Still feel lousy though.

      The Gastro is confused as isn't sure if these are manifestations of celiac still lingering, with everything else improved?? I guess what I am curious or wondering about is if patients cont. to feel like this even after there intestines and labs get better, and if so for how long??
      Anyone with experience on this, or who has a similar process??

      Thanks again in advance
      • 10 replies
    14. TTNOGluten added a post in a topic Thoughts   

      I have had so many tests it seems that it is making me confused at times. Most of them continue to come back negative, yet the nausea, back and rib cage pain, and dizziness in the morning continue. Starting to feel helpless with finding an answer as I just want to feel better. Prior to August 9th I felt great and then bam overnight all of m symptoms came on. Never any GI problems before, but now overnight I have celiac disease, also never have I had any dairy problems for 41 years and now bam all of the sudden I allergy test to have a casein allergy?? I do what I am told, and eliminate these things, and no improvement, even had my gallbladder taken out, still nothing. I am beginning to think this is something neurologic, although MRI of brain looks normal. Really at this point I just want my life back from this nonsense. I will keep looking for answers until I come up with one that makes me better. Who knows maybe this is what I am to expect with celiac disease. Maybe even after the villi heal and labs normalize you still have symptoms. People talk of being glutened. I never knew really what that meant, because since the start of this on August 9th, I have never had one day of feeling well to know what getting glutened is?? Who knows?
      Thanks for your answers I hope to read others insight, and hope that someone else has felt the way I do that can guide me in the righ direction
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    15. TTNOGluten added a topic in Celiac Disease - Coping With   

      Well after a follow up to see the gastro, got some interesting news, I have been gluten free now for over five months, my epigastric discomfort and back/rib pain continue, but after a EGD on tuesday my biopsy is now reported as normal and my labs are also normal. So I guess I am happy, just still trying to figure out why my symptoms seem the same. Curious to know if the musculoskeletal pain, ribs, back, and belly continue even after your intestine looks normal under a microscope?? Any thoughts????
      • 6 replies

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