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londonlass

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About londonlass

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  1. hi We went for the dreaded blood test this morning. I spoke to a lady i used to work with at my daughters dance class last night. She left our company to become a plebotomist and works at another hospital. She gave me the name of someone who works there that she says is good with kids. I took the plunge and went today. It was a completely different experience. They had a proper chair where the arm came round her so all i had to hold was the top of her arm still. The rest of her body was cradled between me and the soft padded arm. She cried a little and it was all over in a matter of seconds. Then i bust into tears because i was so grateful to her for making it such a stress free experience. She even pushed her in the queue because she said you cant make babies wait. i am trying to look at the stool sample thing at the moment but because we are in ENGLAND it is a bit different and i am trying to find out if our docs will accept the results of a new american test. And thanks nini (is Nini short for Nancy, Thats my daughters name and we call her Nini for short.) But im way ahead of you on that one. We found out she couldnt tollerate milk at 3 months old, (casin not lactose) Egg at 14 months, Gluten at 16 months and citric acid at around 17/18 months. So she isnt eating much at all at the moment. I dont doubt the coeliac dx at all. I am absolutly positive that that is correct. My worry is that something is still not right and i dont want to deny her testing for what it is. But i hate putting her through all that and i dont just want them to do tests for every little thing that they can think of unless they have a real reason to think that that may be the problem. That is why i was worried about the blood test, if that comes back negative (which is highly likely ) i dont want them to say its definitly not that and go off down another avenue. And i am terrified at the thought of willingly giving her gluten (how can you make you child ill on purpose). I want the results of any testing to be conclusive. So things can definitly be ruled in or out. I have made an interesting dicovery today . I didnt know there was a coeliac gene so thats my next exploration.
  2. Thanks guys. I have cancelled the blood test, at least put it off till next week. That way i have a bit of time to think. On the gluten free front i am happy that she is coeliac and that she cant have gluten. I have got that under control and she was a different child within a week of taking her off it. The problem we are having is that the allergist is conceren that it may not be just coeliac that is her problem. Her stomach still swells up quite often, and she still gets bouts of D. As she has other food intollerances, i wasnt too woried about the D as its so easy to give her something by mistake. But he thinks stomach swelling should have gone by now. We are now in our 3rd week of D and not getting much better although there has been a little improvement. I think that must be down to gluten exposure but have no evidence. She has not had a reaction so bad since we stopped gluten in her diet 6 months ago. But now he has got me thinking if there is something else we should get it sorted out. I am just not happy to put her through testing that is inconclusive and the thought of putting her back on gluten even for a short while makes me sick to my stomach. She has come so far and i dont want her to be that ill again. Thanks for the tips on making the tests easy, they didnt use cream or anything last time. I had to sit on a chair with wooden arms and try to hold her still. I still get flashbacks and its horrible.
  3. my dd is due to have her 2nd blood test on monday. The first took 20mins of her screaming and fighting she came out with holes in both arms and one wrist and they still after all that didnt get enough blood to test.(hence the need for 2nd test.) This was traumatic for me as well as her and i am really not looking forward to monday at all. Especially as i am reading that you have to be eating gluten for the blood test to show. She has been on gluten-free diet since september. I did question the pead allergist about that at her last app. His response was 'it can still show on the test.' This didnt sound very convincing to me and i am still reading that you have to be eating gluten for the test to show. Am i putting us through all this for nothing? She is 21months old. Has anyone had a positive result while being on a gluten-free diet?
  4. hi there julie are you the same milkfree yorkshire lass ive been chatting too. This is ambers mumma. Its a small world isnt it.
  5. hi sorry to jump on the bandwagon i have been reading your posts and wondered if i can get so info from you all. My 21 month old has multipule food intolerences (milk, egg, citric acid) and of corse the dreaded gluten. She has been gluten free since sept 05 and was almost instantly a different child. we still have issues with her diet but she has normal poop now most of the time. Before going gluten free 8 watery nappies a day, changing the bed and bathing her in the night was normal for us. Things seem a lot different here than in the US. We didnt get to see an allergist untill feb 06 even though we had been waiting since june05. I put her on the diet against medical advise as they wanted me to wait untill i saw allergist, but i couldnt watch her suffer anymore. She was given celiac disease test by pead (we see our peads at hospital here) at 1st app end of nov05. We were told 2 weeks before xmas that there was not enough blood to test but that gp had decided that she was coeliac (we spell it different too.) Saw allergist 3rd feb 06 he says her stomach should not still be swollen and that he wants to test again and if it is positive he wants to do biopsy soon. I am worried about biopsy and am reading that blood test will not show as she is not eating gluten and she is under 2. Is this true? If so why do they keep taking blood, Why not leave it till she is 2? She was exposed to gluten(i think) 2 weeks ago. going on syptoms as she doesnt react to anything else so badly. Big D still not gone although getting better. If this is the case would that count as enough gluten to show on a test? The plan is to do test next week. I am unsure but dont know what else to do. Medics are all very vauge and allergist says it can still show on a test when i questioned him.
  6. just found you all. im not coeliac its my 21month old dd. Its great to hear from people who suffer themselves as she cant tell us how she feels yet . I have read one topic and already answered some of my questions and put her behaviour into context. She holds her head and crys sooo much if she gets gluten. Noone told me that headaches is a syptom. She has also had diorreah 6x for 2 days, then 2-3x for 5days, nothing for 1day then 2xfor 4days 1day clear and 1so far today. She has several other intollerances which leaves her diet very restricted and the only thing i could put her reactions to was stray gluten. It seems from other posts that a reaction this long is not unusual. I dont know anyone else with coeliac and often feel that i have noone to turn to that understands how sick my poor baby can be. keep up the good work.
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