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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


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About jackibar

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  • Birthday 11/23/1960

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  1. Hi, Everyone who so kindly responded...  I'm so sorry I haven't replied in so long - I think I just kinda zoned out.  Sometimes I just get SO tired of fighting all these illnesses, treatments, researching, different meds, etc., and I just burn out and want to "hide out" a while...   For an update...  After this negative test, I did have a saliva test for iGa and it was VERY low - so would that possibly mean that my immune system simply does not MAKE the antibodies to the gluten protein, therefore being a false negative?  Seems I read that somewhere on these forums but I can't seem to find it now.   We did do the genetic testing, and I did test positive for 1 of the 2 genetic markers.  I also had VERY high C-Reaction Protein - 27.3 - and she said that is showing I have some major inflammation going on somewhere.   After that first 4-day trial off gluten did so well, I did go gluten-free again back in Dec. and made it for 9 days that time.  Had the same results - 9 lbs. came off instantly during that time (after being STUCK at 330 "forever") - plus the other symptoms improved.  In Jan. we went on a cruise and I did NOT stay gluten-free.  I wish to goodness I HAD.  When we got back I did immediately go back to gluten-free, but for some weird reason THIS time I did NOT have any positive results.  Symptoms stayed the same, weight stayed the same (I'd regained 6 of the 9 I'd lost on the cruise) - and I got VERY discouraged to be giving up all my favorite foods with NO results whatsoever and just got fed up with the whole thing.   Over the next month or so I developed MAJOR joint pain in my fingers and now have a very painful tendonitis that is stopping me from even being able to make a fist - and it's weird because it hit BOTH hands at the exact same time.  Plus, the leg/ankle swelling will NOT go away no matter how many diuretics I take (is this gluten-related??).   So needless to say, I'm now back on board and taking it way more seriously this time around.  I just really wish (and hope) that I will see at least SOME of those positive results I got the first 2 times - that would really help encourage me to continue.  What would cause this reaction - to do so well those first 2 times and then "nothing" - ??  How long does it usually take to see some positive results after going gluten-free?  Seems many say just a few days and they feel better than in years!  I WANT that!!   Thanks so much for being there and for all the support...  Oh - my ND DOES work under a regular physician and can definitely order any testing we want to do.  I'm just not sure at this point whether it's necessary to go through the biopsy since it seems being gluten-free is necessary for me.  Or would the biopsy show anything else we might need to know?   Thanks again,   Jacki
  2.   Okay, I will give it another try(!) - I honestly don't remember which recipe I ended up going with because I watched SO many videos on it...  This time I WILL stick with that one, though
  3.     Hi, Adalaide!   I did order the PAN meal and tried making these arepas - even after watching many videos on how to do it properly, for some reason mine came out extremely DRY and TASTELESS!  Any idea what I might have done wrong?!! I had such high hopes for this because it sounds so awesome - and my hubby LOVES "corn bread" - so I thought this might be a double-treat for both me and him.  But he hated these!  I know I had to have missed something because everyone raves about how wonderful they taste.  I don't know if I didn't use enough salt - ?  Or enough butter or if it's something else people use to make them tastier and less crumbly!  ??
  4. Hi, Everyone... Just got my lab results today for the Celiac Panel and everything is pointing towards "negative" according to my doctor. However, she IS very "alternative" (she's a Naturopath) and has suggested we do the genetic tests next and that even if it's not "true celiac" that removing wheat is probably a good idea. She seems to be more of a "wheat" person than a "gluten" person as far as sensitivities she suspects... Anyway, wanted to share my results and see what y'all think... Tissue Transglutaminase AB, IGA: Value - 1, Normal - < 4 IGA: Value - 148, Normal - 81-463 Gliadin (Deamidated) AB (IGA): Value - 4, Normal - < 20 Gliadin (Deamidated) AB (IGG): Value - 4, Normal - < 20 Endomysial Antibody Scr (IGA): Negative I've been disabled with chronic illness for 23 years now - diagnosed first as Chronic Fatigue Syndrome, then Multiple Chemical Sensitivities, lupus (has been positive then negative back and forth), Type II diabetes, hypothyroid, thyroid nodules, and chronic Lyme Disease. I've had a problem with generalized inflammation all this time. My immune system seems to be shot. I also have adrenal insufficiency, pancreatic insufficiency, and basically all my hormones are out of whack. No matter what I've done, I can't get my thyroid optimized. Have also been diagnosed with IBS and given Librax to calm the symptoms down when I get "colon spasms" (which consist of SEVERE abdominal pain attacks). Had GERD in the past and was given Zantac - but then learned that it's usually LOW acid instead of high so I switched to digestive enzymes and that seems to have cleared up the GERD (though I know it can still be silent). Starting about 2 years ago, my doctor found weird things in my blood work - low protein, low muscle mass (deteriorating), low calcium... I've also tested very low in iron, Vit. D, and magnesium. I take sublingual B12 so that level is usually fine. My most recent symptoms that have developed are severe lower leg pain (feels like my bones are trying to press out of my legs) that disrupts even my sleep... Also shortness of breath, severe leg edema, swelling all over, total inability to lose weight (I'm 320 lbs.), and heart palpitations. I've been through all the cardiac testing - everything ok there. Oh - and my HAIR - is falling out SO badly!! I can clean my brush and brush my hair just one time and it's FULL of hair again... I'm 52 and going to be bald if this doesn't stop My grandmother on my mother's side is from Lithuania - northern Europe(!) - I've read that celiac tends to be higher in people from northern Europe... I guess the best "test" of all, though, is when I went 4 days gluten free last week (after my labs). The shortness of breath and heart palpitations did NOT occur. My chronic nasal congestion and post-nasal drip cleared up. I THINK I felt more awake (at least a little). My birthday party was on Sunday so I went ahead and ate "normal" - after a breakfast of cereal with gluten I had a BAD attack of the shortness of breath and heart palps... There is a definite correlation between what I eat and at least these 2 symptoms. Does this sound like I've had a false negative test? I know the genetic tests will help a little to clear things up, but just curious what y'all think. Does this sound like a gluten intolerance, or just to do with wheat? Thanks so much for any thoughts or clarifications of all this... Jacki
  5. Hi, everyone...! Just getting started here and am finding many of my usual sandwich products are gluten-free - but what is out there we can put them on (or between) instead of bread?! I'm assuming the corn tortillas would be ok, but are there other options? Thanks so much! Jacki
  6. Would Walmart carry the Snyder's pretzels?
  7. Wow, thanks so much for the responses!! I didn't even realize they had gluten-free pretzels (just getting started with this)! Guess I need to keep reading. I've been reading non-stop since Sunday when this first came to my attention that it might be my problem for so long, but boy do I have a lot to learn!
  8. I'm just starting a gluten-free diet and realized I need to find a good substitute for the pretzels I use when I get hit with nausea. This usually only happens in the mornings after I take my meds that have to be on an empty stomach - I get hit with a wave of nausea and if I don't eat a few pretzels and sip some Coke or Sprite, I will throw up. I think it's the blandness and saltiness of the pretzels that helps. What would a good substitute be?
  9. Yes, I only found out yesterday that I may be dealing with gluten problems, so I haven't made any changes yet. Bread is my middle name Just wondered if eating gluten right before going for the test would help trigger the antibodies to avoid a false negative...?
  10. I'm getting my labs done tomorrow! Just wondering if it would be a good idea to eat something with gluten right before going for the test? If so, what would be a good example?
  11. Thanks for the replies... I'm going to call my dr tomorrow and ask her to add the full celiac panel to my labs I'm about to have done. Will this be enough info to get the right tests or do I need to ask for more specific ones?
  12. Hi, everyone... I just found your forums (and site) today when doing a search on "shortness of breath after eating" to see what came up. Brief summary of my situation... I'm now 52 years old and have been sick to the point of being disabled since Nov. 1989. My first symptoms were dizziness and severe fatigue and weakness. It got so bad that for 6 years I had to use a special high-back wheelchair just to go anywhere because I was too dizzy and too weak to walk or even hold my head up (had "jelly legs). Was diagnosed in 1991 with Chronic Fatigue Syndrome. After that, over the years, was diagnosed with lupus, fibromyalgia, environmental illness (Multiple Chemical Sensitivity), and Type II diabetes. In 1996 we started avoiding chemicals like perfumes and cleaning products and my dizziness and weakness improved to the point I was able to forego the wheelchair. Still exhausted most of the time, though. Also have had a weight problem since age 7 which has now turned into morbid obesity (325 lbs., 5'4"). No matter what I do, my weight won't drop. Thyroid tests come back normal, but my thyroid is NOT optimized (I'm on meds) - still have all the hypo symptoms - major hair loss, dry skin, fatigue, weight gain, fluid retention... Finally in 2010 I went to a Lyme Specialist and using the right tests and the right labs (there are only a few in the country) I tested positive - had tested negative many times before. So I've been undergoing Lyme treatment - but with only minimal improvement. Earlier this year I started having really bad fluid retention in my legs, shortness of breath, and chest pains. Went through every cardiac test but all was normal. Have been on lasix to keep the fluid down. But a few weeks ago, it seemed the lasix quit working. Swelling in my legs, joint pain, severe tendonitis in both knees and hands, shortness of breath, and dizziness all got worse. Had an EKG which was fine. I started noticing my "episodes" of rapid heart rate (heart pounding and racing) and shortness of breath seem to happen after meals - usually in the evenings, but not always. This got me to wondering today whether it could be food allergy related (or sensitivity). Which led me to your forums. I've been just barely skimming the posts but it sure seems this might be what I'm dealing with. My Lyme doctor did suggest I look into going gluten free a while back, but I hadn't done so yet. Just feel SO bad all the time - can barely function, feel "half-dead"... But if there's a chance that this is the REAL culprit - and that I really COULD feel better - ???!!! - then I need to find out! I have been tested for celiac over the years by a couple of my doctors (one is a Naturopath) - but it always came back negative. Also had endoscopies for stomach pain attacks which I thought might be gall bladder but it just showed "gastritis" and a hiatal hernia. So I'm thinking that if I AM having problems with gluten, it is probably an intolerance rather than true celiac - ? Anyway, I'm really thinking I need to see what happens if I go gluten-free. If this is my problem, how long would it usually take to notice a difference in how I feel? Would a week be enough to tell anything? I'm thinking of trying to make a big pot of vegetable soup or something that's simple but that I like and that wouldn't have gluten. And maybe during the week supplement this with baked potatoes/broccoli while I'm learning how to really do this... Would this work ok? Does this sound like it might be my problem?! Are there any good, basic books y'all would recommend for someone like me to learn more about this and the best way to get started? Thanks so much for any help or thoughts... I'm terrified - but sorta feeling excited like maybe there IS a chance I will get my life back after all. I'd about given up hope. - Jacki