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javic

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  1. 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?


  2. We had to wait 2 months between my 3 year old son's first positive blood test (which was highly elevated) and his first biopsy. The biopsy turned out to be inconclusive, much to the surprise of the gastroenterologists. They fully expected to see damage, but just didn't. Their next step for us was a follow up biopsy, some three months later. All this time, he has been on gluten (with the exception of 10 days after biopsy 1). I agree it is hard to keep them on gluten when you are just thinking of how much damage/suffering it could be causing, but I would say that for at least the first biopsy you must remain on gluten. A clear diagnosis of coeliac is much easier to deal with than an inconclusive one (and a follow up biopsy ..) If your child's symptoms are really affecting their quality of life, there should be a case for reducing the waiting time.

    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!


  3. 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?


  4. 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.


  5. I would keep him on gluten and move forward with the biopsy in order to get the formal diagnosis. I made this decision with my daughter because my thought is that if treatment options become available in the future I wanted her diagnosed so she would be eligible. Our doctor indicated that a piece of bread of day was sufficient for the biopsy... i know they say to gluten load for the blood test but it's not as necessary for the biopsy. I would suggest starting to cut back now but have him eat a minimum amount each day.

    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.


  6. 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!


  7. 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.


  8. 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?


  9. 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.


  10. 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?


  11. My son had a high positive blood test for celiac. We went to a gastroenterologist on Thursday who said we need to do the endoscopy and biopsy. The only date she had available this year is when we will be overseas. It will take another 6 weeks for her to have a free spot.

    He does not have any pain, diarrhea, vomiting or rash from gluten. He barely has symptoms at all. I wonder if it will matter if we leave it another 6 weeks? I just worry what unseen damage is being done in the meantime.

    With his blood test, he had nutrient levels checked and all were fine. His b12 was actually high. I am a bit confused as I thought celiacs were supposed to be malnourished - so why are his levels good?

    The only signs I see on my son are behavioural ones, and I can't say for sure that these are caused by gluten. He is irritable and lethargic and just not terribly happy. I would love to see the end of those!


  12. Thanks very much Nicole. The Dr did do tests for many vitamins. His folate and b12 were over the normal range. Vitamin d was one point below normal. Everything else was in the very normal range.

    I do want to go gluten free ASAP but now managed to get an appointment to see a pediatric gastroenterologist next thursday. So I wonder if we should wait until then. I just had my blood tested today and if I am positive I think I will have the endoscopy.

    Re the gluten free diet, I do want to start very soon for my son but wonder what else we might need to eliminate? I have heard about cross reactivity with milk, rice, buckwheat, quinoa etc and know that they do tests for these in the USA at Cyrex labs. I am in Australia though. Anyone know about these tests or know if I can get them done in Austraila? My Mum has issues with dairy as well as gluten so I wonder if these cross reactivities might run in the family as well?

    Thank so much everyone for your help, advice and support!


  13. Okay so the test results showed really high AGA IgG. It was >100 and positive range was >30.

    The T-glutaminase was 9 and positive is >8.

    I was given a referral to a gastroenterologist but when I called they said she is not taking new patients.

    Options, I think, are gene test or endoscopy/biopsy. But not sure why we need to bother with that. If this test is positive, shouldn't we just go off gluten and see what happens?


  14. Just called the doctor's office again to try to get the results but don't think the receptionist was able to give them out. She changed our appointment until tomorrow instead so hopefully will know soon.

    One more question though - my son can be quite obsessed with eating bready type products. Is this common with celiac? I figured it was quite normal for humans in general, but wondered if wheat has a more addictive quality for celiacs?


  15. My son recently had a blood test for celiac and today I called the Dr's surgery to see if results were in. The receptionist informed me that the test for celiac was "slightly abnormal" and made a non-urgent appointment for us with the doctor next Monday.

    I am now really wanting to know what this means - I don't want to wait until monday to work out what is going on.

    Anyone have any idea what a slightly abnormal blood test for celiac means? Or any ieda where I can look online for more information?

    The reason we tested for celiac was because my son has a very bloated belly, poor appetite (very fussy eater) and complained of stomach pains every few weeks. He is also quite irritiable and his energy levels have decreased a lot in the past couple of years. He is also short for his age, but then we are not tall people. Also, the blood test showed normal levels of iron, zinc, vit d and other nutrients.