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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 javic

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  1. For those who suffer from mood or behavioural effects after eating gluten, how long after eating gluten does your mood start to change? Also, what kind of mood symptoms are they and how long do they last? My son is coeliac and has only mood/behavioural symptoms and I'm curious how it affects others with similar symptoms.
  2. My son is 4 and just had a gastroscopy to test for celiac and we haven't got the results back yet so he is still eating gluten as always. In the past couple of months, he started up with some really difficult behaviour. He screams and growls and will hit or pinch or scratch. He makes unprovoked attacks on his little sister. We noticed that when he was not having any dairy (but still on gluten) he seemed to stop this behaviour. Then, when he had dairy again, he started behaving terribly. Has anyone else seen this with their child? Can casein cause these issues in children even when gluten does not seem to?
  3. Cave mum, i see you got a diagnosis for your son. I wonder why the first biopsy didn't show damage. My son had his gastroscopy on the 10th. They said they did not see definite celiac and would have to wait for the biopsy results. He had some bleeding at the biopsy sites and had to stay in for another 6 hours afterwards, was not allowed to eat until 1pm either - he must have been starving. Then, some woman came along, said they needed more bloods and started jabbing him with needles. He was pinned down by 3 people while he screamed and wailed - until his gastro came by - a complete fluke of timing - and said "what are you doing? stop! I never allow that to be done to my children!" and the blood woman skulked off muttering that she was only doing what she was told. It was so freaking traumatic for me and him both. He has told me he never, ever wants to go back to hospital again. So, if they tell us his was inconclusive and they want to do it again, I will be devastated!
  4. Thanks for your thoughts. It convinced me to get her tested so we went today. She was very upset but it was over in a minute or two and we'll get a better idea now. Very glad to have done it.
  5. My daughter has just turned two this month. Her brother has just been diagnosed with celiac so we got a gene test for my daughter (via cheek swab) and turned out she is homozygous for the dq2 gene (has two of the celiac gene). Now that I am aware of it, I've realised she may have some symptoms of celiac. Around 5 months of age she started waking in the night screaming as though in pain. She continues to do it to this day, not every night, but some nights, even if I am with her she will push me away and scream. She also would seem to scrunch her legs up when she was younger, as though in pain. I thought it could be UTI but doctors did not seem interested. She was quite fussy during the day when she was young, and still often has days when she seems very upset for no discernable reason. She breastfeeds constantly still, but does not eat much in the way of solids. She has some sign of very early tooth decay in between her two front teeth. She is on 25th percentile for height, but has gone from 25th to <3rd percetnile for weight. She has recently started saying she has stomach ache - but we are not sure if she is just copying her brother. I do want to get her blood tested but she is very scared of strangers and I worry it will be very traumatic for her. If I do not get her tested, we will be going on a gluten free diet after my son's biopsy in two weeks. Thing is, if she is not confirmed to have celiac, then we will not know how strict to be with her diet - can she eat cookies at her friends house, cake at school parties? So should we get her tested while we can, before we all go gluten free? Is the chance of trauma worth knowing for sure?
  6. My 4 yr old son had elevated gluten antibodies in his blood and in scheduled for an endoscopy/biopsy on the 10th of Jan. I decided to get my daughter tested for the gene (via cheek swab aka buccal smear). They found that she has 2 of the DQ2 gene which, according to the internet, means she has 1/3 chance of developing celiac. We plan to go gluten-free as a family after my son's biopsy so if I need to get my daughter tested then it should be done now. My son's gastroenterologist is out of office and Christmas is so close. I need to know what to do right away. If I get her to do a blood test she will be really upset. She is scared of strangers and hates being touched. But I also would like to get it sorted now. Also, anyone know more detail about what it means to be homozygous with DQ2? I read there's increased chance of refractory celiac and lymphoma.
  7. I'm interested in finding a resort that is completely gluten free. I heard about one on the radio but when I did a search on Google I could not find anything. Does anyone know of any gluten free resorts anywhere in the world? Or have any idea of a travel agent or other place that might be able to help me find one? Thanks!
  8. How are the stomach aches going now? Have you had your antibody levels tested again since diagnosis? Have they gone down? I was reading something about refractory celiac disease - I believe this means that the symptoms will not go away even on a gfd. Very rare mind you. More likely to be additional intolerance. Have you worked it out yet?
  9. Christine, thanks so much for your reply. The point about the treatment options really made sense. I emailed a man involved in the research for development of the celiac vaccine and he was so wonderful replying to me in great detail and offering further help. He brought up the point about the treatment options only being available to diagnosed celiacs. He also explained in detail how celiac is sometimes diagnosed without biopsy in select cases when there are a number of other things present but only if transglutaminase is very high. And this still is controversial and could result in incorrect diagnosis. All in all, we will be going ahead with the biopsy.
  10. I spoke to the gastroenterologist today and she convinced me to go ahead with it. She mentioned that, if the tests were misleading then there could be something else going on other than celiac and that if the endoscopy ruled out celiac then we'd know to look elsewhere for the issue. Also, true enough, if we did not have a 100% confirmed diagnosis then we might be tempted to let it slide, not worry about the crumbs in the butter, or if the restaurant did not have a dedicated toaster/fryer/whatever. i feel really sad and scared still though, so if anyone has any words of comfort it would be much appreciated!
  11. No one in my family is diagnosed but my mum has been off gluten for 15 years - self diagnosed because the doctors were useless in helping her. No gluten-free trial done yet as we only just got blood tests and were told to keep him on gluten for the endo. The results were: AGA IgG >100 (positive > 30) T-glutaminase 9 (positive > 8) I don't really understand what this means apart from that he has higher than normal gluten antibodies.
  12. My 4 yr old son had high positive antibodies in his blood test. The gastroenterologist wants to do the endoscopy. They sent me out info and, of course, it mentioned "risk of death". I'm so scared! I just can't imagine putting my son through it. And what does it really achieve?! Surely, there are other ways to test for celiac? And if he has issues with gluten anyway (sore belly, distended belly) then surely he should just stop eating it. Why oh why should I subject my son to this?
  13. Sorry, I should have made it clear. My son has tested positive for celiac on a blood test a couple of weeks ago. We have not had an endoscopy yet. I noticed my sons behaviour change quite dramatically when he was two. He slowed down a lot. Went from running everywhere to walking and then, over time, wanting to be carried. And then recently I noticed his inability to tandem step or catch a ball like before. I've heard celiacs have reduced blood flow to the brain which could explain things like these gross motor issues. I just wonder if permanent damage is done or if it is wholly reversible. My son's nutrient levels were all normal so it is not a matter of malabsorption/ malnourishment.
  14. My son was really advanced with gross motor skills when he was tiny. He walked at 9 months. Just before he turned 4 they tested his gross motor skills and he was behind. Could not stand on one leg or do tandem step. Also, I noticed he can no longer catch a football - this was something he was able to do a year ago, but now he has real trouble with it. Could this be the celiac?