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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About the57motz

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  1. Well, I've decided to go gluten free irregardless of the test results. the genetic tests came back negative but I'm going to get a copy of them monday (or tuesday) from the doctor's along with my original blood test results to find out exactly what was tested etc. I've been reading this forum (fanTASTIC info thank you!) and never knew that someone could be iGa deficient and I'll find out if my original test ever testing for total iGA. I'm definitely gonna do the enterolab tests because they sound alot more accurate. tofu8grrl - if I understood what i've read so far correctly, genetic tests look for certain markers in a specific spot. There are conflicting reports even among geneticists on whether there is an accurate genetic test for celiac disease but the dq2 & dq8 (if i'm wrong PLEASE someone correct me! there's enough false info out there in this disease already) markers are the most commonly found in celiacs. I believe that there is also a DQ1 marker that can be found, and I also read that there is 1 % of celiacs that do actually have no genetic markers at all??? is that correct? because I've also read the opposite if you don't have DQ2 or DQ8 you can't get celiac. Personally I think that last is bogus science but I'd welcome other comments. All i know is, every friggin' time I eat gluten (especially wheat) I get really sick. various things but I've been eating 2 slices a bread a day (sometimes having to force myself) for 1 month or 2 and now my knees hurt like a muther and are swollen. so that's it folks, i'm off gluten. I'm not going to risk neurological & other kinds of damage. I'll post my enterolab results, I'm going to send for the test in 2 weeks or so.
  2. If it were just me, I probably would. But since It's hereditary I've decided to at least get the gene blood test, and maybe try the testing once more time but make sure I'm glutenized clear up to the day of the test. (unlike last time) If I find out that I have the gene, I'm going to have my brother and his ex wife test my niece for the gene also. I'm putting myself thru this because if i have tested proof that I do, I'll have a stronger position to ask for genetic testing for my niece- it's out of concern for her. I don't want her to go thru what my mom did, or even the stomach trouble i've had for so much of my life.
  3. If what I had was dermititis heptiformis, I feel for your cousin lauren- it is just horrible!!! I used to scratch so bad, my skin would blister and bleed. Where is yours cousin's excema? (if that isn't too personal)
  4. yes, they did a biopsy but as I said I'd been better than 10 years plus eating minimal bread, gluten etc and had been symptom free for a long time until I moved back closer to my bread loving family., and before the biopsy was done I went gluten free again for at least a week and a half before the endoscopy and biopsy. I had been thinking about going to a celiac centered clinic of some sort and getting re-tested, also thinking of getting a genetic test done because I am so convinced it runs in the family. My strongest motivation though is - my beautiful 14 yr old niece who has been told she has a minor/small scoliosis. I am determined to make sure that she doesn't have the disease or if she does she is diagnosed early, and is on the diet so she doesn't go thru what my mom did. my mom had scoliosis, arthritis and osteoporisis. she had celiac disease for years and ignored the diet. she was so sick towards the end, (and god she adored good bread and pasta) that if she ate a a sub at her favorite pizza place she literally had 20 min to get home before she got sick.
  5. the doctor I went to was a gastroenterologist btw.... forgot to mention that. and she also did a full blood work, checked my liver, my thyroid my calcium, fat & cholesterol levels- I was tested as absorbing nutritition normally. But (and believe me I'd be happy if I did not have this disease) I'd spend better than 10 years + eating almost no wheat, no gluten based products.
  6. I would like to post my history here (geez hope you don't mind?) I would love to see what people think here. I was diagnosed with irritable bowel disease in my teens, pretty much by default because they found nothing else. I had what was called atopic excema for years (god it was HORRIBLE woke me up at night constantly i'd wake up just scratching like a dog) I also had low blood pressure. In a doctor's office my blood pressure after standing up dropped to 60 over 50. I would wake up in the early morning with terrible stomach pain. Also in my teens I loved peanut butter and jelly sandwiches (like most kids LOL) but they made me sick. I always thought it was the peanut butter.(fat) When I got involved with the man who was to become my husband now exhusband- his first words to me the "first morning after" was " do you know that you fart like a dawg in your sleep?" Celiac Disease runs in my family. My mother absolutely had it, I suspect my grandfather did also. (i posted here last april, I think once or twice) when my mother was a child, the only food they fed here was rotten bananas and jello. she told me once she found some bread, and crammed a bunch in her mouth before her mom could stop her and in minutes was rolling on the floor screaming. I have gas upper & lower every day (i saw the fart thread good god my male geek coworkers look at me and say "feeling gassy today?" ) the diarrhea is intermittent but sometimes when it hits - I HAVE get to the bathroom fast, my bowels literally turn to water. I have distended stomach, gas diarhea, stomach pain (pain not as often)I also have (sometimes) acid reflux, and just plain hearburn. When I found out that celiac disease was hereditary, I started thinking about my symptoms and realized the most symptom free i was was when i lived in another state and ate almost NO gluten at all. My weight was great, my energy was high (i walked everywhere) my stomach symptoms were nill. So when I realized this I voluntarily tried the gluten free diet. (after moving from that state where I felt better I had started eating bread etc again) I just couldn't believe how much better I felt. So I went to a doctor, she knew of celiac disease and said it wasn't rare but "uncommon" she was very interested in my family history (it blew my mind when I remembered my grandfather had colitis, and in his later years had a vitamin B deficiency that had to be resolved by shots because pills didn't work. my mom the nurse gave the shots to him) I took the blood test, everything was negative except 1 of the 5 (i forget I want to say it was eGA but don't trust my memory!) the 1 of the 5 was 99 out of 100. (this was after I'd been pretty much gluten free for weeks) She told me to just "rule out" celiac disease, the only reason she had me do the endoscopy was because of my family history. so she had me wait like a month, eat a normal glutenized diet. I did, and after 2 weeks or so got so sick that I was afraid I wouldn't function at my new job. (i didn't realize brain fuzziness was a symptom just saw that on one of the threads) so i stopped about a week and a half before the test. She said that was ok. they saw no damage to the intestine, the dude that developed the samples had his own method of doing it they told me, he used something funky like vinegar or ammonia because he got better results. I'd decided that I was not celiac except especially recently I still notice that EVERY TIME i consume gluten on a regular basis I start to get sick again. Wheat in particular. any thoughts? (the gas is HORRIBLE, I have sent my german shephard mix dog from the bedroom barking and sneezing like a fool LOL) are the online blood tests on the up & up? are they admissable to insurance companies?
  7. Thanks everyone- and best of luck to anyone that is about to be tested, or start the gluten-free diet. I believe that I'm actually going to get the capsule endoscopy. The doctor asked me if i was going to be gluten free before the test and i said yes. I'm guessing because she asked me first, that she will make sure that the pathologist gears his results towards that? Does anyone know about the capsule endoscopy? I read an article about the biopsy that scared the CRAP out of me. (sorry...that was a pun of sorts) the rare but possible side effects {{{shudder}} is it the same with the capsule test? no, i've not had the genetic test- i'm going to though. i saw a link to that endolabs (spelling not right) web site- and I'm going to go for it. I want to establish either that I have the disease, or that the gene runs in the family because of an article I read a week or so ago. It said that adolescents with undiagnosed celiac disease, even asymptomatic ones had the possiblity of having low bone density because it's possible that they may not be absorbing calcium. I have a beautiful 13 yr old niece that I want tested. I told my sister in law, albeit by email and never got a response. When i told my brother about it (he is a nurse believe it or not) he asked how it went but eventuall all but laughed at me. If i can prove this runs in the family, I'm thinking I can force the issue. At least pay for that genetic test or the entolabs kit.
  8. Hello I've lurked on your board a few weeks, so I'm new here. Celiac Disease runs in my family- My mom had it from childhood, and generally only avoided gluten when she got sick even then would eat it anyway. In the end years of her life she had osteoporosis (lost 5 in in height) scoliosis and severe degenerative arthritis of the spine. the osteoporosis, and arthritis i believe were purely caused by her celiac disease. I never realized that this was hereditary until recently for various reasons I started researching it. I believe that it's almost a given that my grandfather (mom's dad) had celiac also. I went to the Digestive clinic doctor- had the blood test done. it's funny because i generally do not eat large amounts of bread, pasta etc. that is pertinent, but i'll try not to ramble. anyway- i was negative for 4 out of the 5 antibodies- one was positive the doctor told me she was almost ready to not test for the one i was positive on because people seemed to get false results. she also said that the false results were usually 30 or so. Mine were 99. we discussed it- and both decided that i needed to have the biopsy done to be sure. I was diagnosed with irritable bowel disease or spastic colon in my teens. that diagnosis was pretty much by ruling out everything else. the thing that most fascinated me in my research- was the rash that often comes with celiac disease because also in my teens i had this horrible blistery rash that ITCHED MY GOD IT ITCHED!!! like nothing else i have EVER dealt with. it itched so badly at night it would wake me up. I also had low blood pressure. (those are the high points) I started this research because (funny enough) after a week of eating more sandwiches than I have in years in the same week- i was belching, gassy, and having severe diarhea. a coworker said to me " don't you think you need to look into this?" i realized that she was right. then i realized that the most symptom free period in my life was when i was living in miami, and eating mainly stir fries, rice, potatoes- i realized i ate ALMOST NO GLUTEN. i realized that week that i was so so sick- i'd eaten a tremendous amount. so i went gluten free (even stopped beer geez that was hard, i do love my beer i will admit) within 48 hrs the difference for me incredible. i felt so much better. after 4-5 days- i ate some gluten. got symptoms again (diarhea, indigestion, bloating, gas on both ends) the doctor told me for the test i needed to eat a normal diet- incorporate gluten in again to make sure the test was accurate - asked me to do this for 2 weeks. i lasted about 1 week and a half before i was getting so sick that i was afraid i was halfway there to a colitis attack. (coppery mucus, stomach cramps and almost dysenteric diahrea at this point) anyway- i hope y'all don't mind the descriptions of symptoms here- again my test results (i think doc said it was the iga test) were 99. i'd welcome any comments. thank you for this forum!