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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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity

Another Positive Test

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My 14 1/2 year old daughter has severe celiac (was diagnosed almost 2 years ago with an anti tissue transglutaminase of >250 with normal range less than 20) She was really sick needless to say. At barely 13, she weighed only 74lbs (the doctors felt she was merely growth delayed...I had her to two Endocinologists). She was tiny, hadn't matured, and we found out finally through labs she was horribly anemic with a serum ferritin level of nearly 0. It was not good. We took her immediately to a Pediatric Gastroenterologist at that time and she suspected either Ulcerative Colitis (as I have it) or Crohn's Disease with an active bleed. She decided to throw in a Celiac panel for the heck of it. Imagine our surprise? I had never heard of it. Let me further enlighten y'all....we are of Irish descent (hmmm), my son has Asperger's, we won't discuss the ADD in the family (too numerous), my mother has chronic "IBS" as does my grown daughter..... So did I (along with my U.C.....poorly managed with meds, I might add). Turns out I was diagnosed by blood test and bx this year too with Celiac disease. I am doing well on the gluten-free diet. But back to my daughter... We started her on the gluten-free diet and also Ferlecet (sp?) infusions for her anemia. Turns out she also has Alpha Thaalasemia. After 8 infusions, she did great. She has gained weight and is now 100 lbs and looks healthy. Her CBC looks great. Whats the problem? I took her in last week for a follow up anti-tissue transglutaminase and it came back yesterday at 39...still abnormal. So she's having indiscretions. We are 100% gluten-free here at home. I have talked to her about health complications til I'm blue in the face (as I am under treatment for osteoporosis at 44 for untreated Celiac) and that's a minor problem in comparison to others i.e. cancer, etc... I think I sound like a broken record. We go to see the G.I. next week and my daughter really likes her. And I know she's sick of the disease too and frustated. I've thought about getting involved with bringing "Making Tracks for Celiac's" to our hometown and getting her involved too. I know she gets fed up with people not knowing about it and having to explain it to people over and over and the cafeteria ladies and what designated oil is and isn't...and would they puh-lease stop putting rolls on her plate!! I know how she feels....probably about the same way when at work when they offer you cookies and you say "Oh, I can't have that." and they say, "Oh, take just one." <sigh> It's just easier to say you're allergic and save yourself the time. Anyway, anyone have any suggestions for a frustrated teenage Celiac and a tired Celiac parent? Thanks for the ear and the shoulder......


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I'm 13 and my e-mail is and i was dx w/ celiac disease when i was 20 mnths so if she has any ?'s she can e-mail me


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    • turkey
      Turkey is gluten-free as long as it is not stuffed. You can make a good gluten-free stuffing using gluten-free bread. Dry the bread first and add what ever spices or veggies you wish, but cook it in a separate baking dish because stuffing the bird with it can cause bacteria to breed. And gravy must be thickened with corn starch or potato starch instead of wheat flour.
    • turkey
      so you can't even cook without stuffing inside turkey and not get gluten? Sorry I'm not familiar with turkey and wondering if I can have it while rest of family gets stuffing? In other words is turkey gluten free?
    • Numbness, Tingling in limbs & Joint Aches
      Hi Ender, Although you didn't get a complete thyroid panel, from what I see you are hypothyroid.  Most Dr's only care about TSH and yes yours is in the range, but when mine is that high I get terrible joint aches.  I feel best with mine around 1.  Your free T4 isn't just a tad low...most people feel best with it around 50% of the range.  I think you could benefit from some thyroid replacement medication.  You should also get a full thyroid addition to what you've had done a free T3, TPOAB and TgAb.   The last 2 are antibody tests.  Hashimotos is found fairly frequently with celiac.   Low vitamin D can also cause aches.  It would be really good to have your levels checked again.  Until you are healed you may not absorb it well enough so it's good to keep supplementing.  It took me a year and a half gluten free to get mine to an acceptable level for my Dr and he's keeping me on 2000 daily for maintenence.  For the numbness and tingling my Dr had me add magnesium as I was having horrible tingling in my feet and my B12 was good.  I have to say it has helped a lot. I hope you are able to get this figured out...I would definitely start with a complete thyroid panel and recheck of Vitamin D.  Here's a bit of reading on thyroid stuff if you have time.  Hugs!
    • Positive & Increasing TTG -- questions re: testing & history
      I'm a 31-year-old high school teacher (currently on disability) who has been dealing with 4 years of major gastrointestinal problems, which resulted in major surgery for a rectal prolapse & redundant colon last August, prior to which I had lost about 20 pounds. The source of all my gas, bloating, distention & diarrhea has remained basically unexplained though ("lets trust the surgery resolves your obstructed defecation and in turn your gas... d'oh it made both  worse"  ) , and my symptoms have only gotten significantly more severe since surgery. I'm facing a permanent ostomy. I've also, for the first time in a lonnng time, been eating a lot of gluten every day... primarily out of depression and (misguided?) attempts to gain weight and keep stool soft. I've been typically slightly underweight for 10+ years. Suffered anorexia for a period 10 years ago, and since recovering have "naturally" maintained a low weight and low-wheat lifestyle (I've always been put off by heavy wheat items like bread, sandwiches & pasta, *shrug*). As a child I had crazy severe & unexplained constipation issues. I've also had strong teeth discoloration & marked enamel defects (& two missing adult teeth(?)) since childhood. Depression & anxiety have been longterm issues. I have osteoperosis, which was perviously explained by me being anorexic from 19-22. Everything changed 4 years ago upon the onset of all my (severe) classic-IBS symptoms (gas/bloat/d+c). On a low-gluten diet, TTG bloodwork came back "low-positive" repeatedly. A biopsy showed no damage, but my gluten intake at the time was limited to 2 cookies a day, or occasionally 2 cookies and a piece of pizza. Would this have been enough to show damage? I trialled going gluten-free for a few months, and didn't find a ton of relief... so assumed I was just FODMAP intolerant... however I was eating lots of oats and lactose that whole time, which I have subsequently identified as major triggers... not to mention just lots of gluten-free junk food. Wheat was obviously a significant gas trigger since this hit, but that seems typical for gut illness in general. Since my major surgery and the continuation and worsening of symptoms, I've connected with an internist who has again and again pushed me towards eating wheat as a method towards weight gain and healthy non-anxious eating. I also found that a high-wheat diet would provide the proper consistency (i.e. very loose diarrhea every day) to allow colorectal function (the surgery I had went very poorly and caused major obstructed defecation). I have not had success gaining weight, and have found my digestive system feeling assaulted like never before 24/7 by bloating, gas and discomfort, despite a relatively low-residue diet and constant elimination. My appetite has never ever been worse. I just had a fourth TTG test, and after this high-gluten diet I am now testing POSITIVE as opposed to BORDERLINE. Questions: 1) I suspect my first biopsy's gluten challenge wasn't quite heavy enough in terms of gluten content (couple cookies a day). Thoughts? 2) Could being underweight alone cause an elevated TTG? How about simply having colorectal surgery? "IBS" or the supposedly non-pathogenic gut bacteria blastocystis hominis which I've been diagnosed with? I haven't been diagnosed with any other autoimmune condition, and I'm so confused. So far everyones just shoving the TTG off on IBS/anorexia, which doesn't make sense to me at all. 3) I really don't know what to do right now. I'm 20 pounds underweight, in digestive hell, with most of my medical support still suspecting I'm merely acting anorexic. I most assuredly am not. They want to put me on a tube. I would really like to get off the gluten in order to ease my system and gain weight, as I'm clearly reacting to it and have been deluding myself for the past year trying to recover from this surgery, but I'd also *REALLY* like some diagnostic confirmation so my doctors & family all stop looking at me like I'm crazy, and that so I can act with appropriate caution/freedom in my dietary future. 4) Do my childhood experiences line up with any celiac sufferers? I've heard about enamel defects, but missing teeth or crazy constipation? Obviously osteoperosis could connect, and doesn't *really* line up with my anorexia considering I was already fully grown. 5) Is there any way to get EMA/HLA blood tests done in Canada (BC)??? It's really frustrating that my only chance for any confirmation is waiting months and months here for another biopsy, especially considering how dire the need to improve my digestion is ASAP. I imagine if I could get an EMA test & it came back positive I would just take that as my confirmation and be able to move on with confidence here. 6) Is it common for celiac sufferers to find themselves reacting to FODMAPS and/or histamines in foods while they're  still maintaining a gluten-filled diet? Gluten definitely isn't my *only* trigger right now, and that's probably a primary reason I haven't been led to eliminate it at. Sorry for all the talk & questions, but I'm in an incredibly challenging place right now, my head is just swimming and swimming, and any thoughts would be greatly appreciated!   Bloodwork Current, after six months of a heavy-gluten diet = Tissue Transglutaminase Ab IgA ---18.0 ---- <12.0 U/mL = normal
      POSITIVE -Probable celiac disease but this should be confirmed with a small bowel biopsy. [Tested by a multiplex flow immunoassay
      (BioPlex) method.] 

      6 months ago = Tissue Transglutaminase Ab IgA ---13.0 ---- <12.0 U/mL = normal
      BORDERLINE - Borderline anti-tTG. Suggest repeat if clinically indicated.Consider the possibility of celiac disease - a small bowel biopsy may be required. [Tested by a multiplex flow immunoassay
      (BioPlex) method.]

      2012, prior to negative biopsy = Tissue Transglutaminase Ab IgA ---24.0 ---- <20.0 RU/mL = normal
      Weak positive anti-TTG. Consider the possibility of celiac disease - a small bowel biopsy may be required.  
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