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About tazallie

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  1. I would recomend waiting to go gluten free at least until you have spoken to the GI...that way he can see what is really happening with your son...and even after you have spoken to him you still dont have to have the biospy and can go gluten-free, but this is a personal decision for you and your family. But it will be a lot easier to leave him on gluten now than to have to consider doing a gluten challenge later. In march my dd had the blood test and while I was waiting for the results I put her on a gluten free diet, which really did work so my Dr refered me to a Pead GI even though the tests were negative...however when I finally saw the Gi it turned out the blood work was incomplete and the results unreliable. So I have now had to make the hard choice to put my daughter back on gluten for three months and then do the biospy...and believe me after having a well daughter again it is heart breaking to make the choice to make her ill again for three months...but for me and my daughter (shes 10) we want to know if it is coeliacs for our own peace of mind...so we start the challenge in january and do the biopsy in march and I wish everyday that she had still been on gluten when we saw the GI.
  2. Hi I am really glad that the diet is working for you, and that should tell you that she defienetly needs to be on it, however I am concerned that you said your daughter has been like this since birth. Coeliacs or gluten intolerance wouldnt cause symptoms from birth, only when she was introduced to foods containing gluten (ie when she was weaned, same I believe with other food alergies (but not sure on that one)) but there are illnesses that improve on gluten free diets that are present from birth, that perhaps really need to be looked into especially with the problems with her temprement and bonding that have been present from birth...because it is highly unlikely that they were caused by gluten that early on. It is possible that she is gluten intolerant or coeliacs now but they wouldnt have caused the symptoms from 2 weeks old. There is nothing more frustrating that someone telling you there is nothing wrong with you child when you know without a doubt there is...it took three years for me to get my now 10year old diagnosed in april...and it was the longest scariest 3 years, so I really hope you get some answers.
  3. Hi My daughter loves the Juvela fresh loaf, you dont have to refresh it you just eat it straight from the pack (and can be frozen) and it really is nice She also loves the bread I make her out of the Juvella harvest mix...infact she can eat half a loaf in one go if I let her! (and again it doesnt have to be refreshed so long as you eat it within three days and keep it in an airtight container). But you would have to check if it was available in the USA as I'm in the UK I dont know if you want sugestions for lunches other than sandwiches but my Dd loves a cold rice salad (rice, chicken or bacon, onion, sweetcorn and and a dash of gluten-free Worstershire sauce) she also likes lettuce leaf sandwiches...instead of bread I wrap ham, cheese or chicken etc in a lettuce leaf (Not too cripsy a leaf) and she eats it like a sandwich. We also use corn torillas to make wraps instead of sandwiches but you need to use a moist filling (Mayo etc) so that its not to dry. I hope some of this helps, I used to tear my hair out trying to find alternatives to 'cardboard' sandwiches as my dd calles most gluten-free bread
  4. Princessa, I think you are so very very right about them wanting to eat what everyone else eats. I know my daughter is very aware that she eats different foods and I think no matter what great foods I make her its still not going to be what her friends are eating. I know for myself and Im not GI but when we are fully gluten-free (as we are again now) I sit sometimes and want a wheat bread sandwich but I can console myself with the fact that when I go to work in the morning I can have a wheat bread sandwich if I want...our kids cant, it really is so hard for them. My daughters birthday is in two weeks and I'm throwing her a party with all her school friends, when I discussed the menu with her tonight (Its all gluten-free) she threw a fit and said she didnt want to make her friends eat weird food...it was awful that she feels that way but at least I have some insight into how she really feels about gluten-free food and why she is glutening herself. We had a discussion on the fact that all of the food is things some of her friends have had before at our house and that it is good that her friends get to try her food...that some might even like it better than their own. She got excited that she might have something they want so I'm going to have to make sure I make the best gluten-free party food ever!!! (And the cake she wants is going to be interesting!) But at least because of it we were able to have a good discussion, and she admited 'again' that she hates how she feels when she glutens (so far we have had the extreme tiredness that is still there, the horrid snappy moods and now she has a rash...)this is the longest lasting glutening effects since she started self glutening, so maybe this one will sink in better, and hopefully if the food goes down well at the party it will all go to making her see the benefits of gluten-free again. And Princessa I hope you and I and everyone else in this postition can help our kids understand what they are doing to themselves and feel better about their diet.
  5. Hi I juat wanted to add that just because your son is testing negative on biopsy and blood does not mean he does not have gluten intolerance, medically known as 'Non Coeliac Gluten Intolerance' or NCGI. And the only way to diagnose this after all the coeliac tests are negative is to enter on a gluten free diet and monitor with your doctor any improvements. Its believed that around 10% of the western population has gluten intolerance but only 1% of that group will then test positive by biopsy for coeliacs. The symptoms and problems of NCGI are exactly the same and can range from very mild to very severe, the only difference is that with NCGI the villi are not damaged in the same way as they are with ceoliacs. A person with NCGI can test positive for the coeliac gene but negative for anything else and it is suggested that in this type of case there is a possible predisposition for the patient to develop full coeliacs later. I hope this helps and as happygirl said chase up what was weird on the biopsy
  6. Yeah I do have some photo's and in one of them she looked awful, I will try anything at the moment so I'll dig out the photo to remind her of what she looked like on gluten and how much better she looks now. Thanks for all the advice
  7. Thanks for your responses, I hadn't really thought about gluten being addictive but that actually makes a lot of sense, so thanks for pointing it out. As to alternatives, thats what has me stumped I have found alternatives that she loves for most things. I bake great cakes, biscuits and she loves the bread I make her. I have found alternatives and modified receipes for everything she loved before gluten-free and some of the receipes as better now than they were before. As to the cost, it is a lot more expensive going gluten-free, the things to make her bread cost me
  8. Hi I read this with some interest. My 10 year old daughter has been gluten-free since april, before that she complained often of hip and groin pain and having read this I have just realised she hasnt complained of it once since april...I dont know if it is the gluten intolerance or not but I found it interesting to read this. The groin pain would often be followed by a water infection (again they were reguler occurences but none since april) but the hip pain could happen at any time and could be crippling. And I am so relieved that there are others out there with 10 year olds who play on it! My daughter deserves an oscar some days for her acting skills, but she hasnt yet realised that when she is glutened she goes very very pale with big bruised eyes...and its a give away when she is still pink and complaining but I love the idea of giving sweets out of a medicne bottle..will try that as it will make her feel that i do care but without her having to have medicne for nothing.
  9. Hi I just wondered if anyone had any advice for me as I am at my wits end. In April after a long three/four years of illness we embarked on a gluten-free diet, my GP refered us to a specialist who confirmed she was Gluten intollerant based on her history and the elimination diet but couldnt confirm if it was Coeliacs as the blood test was negative but one test had not been done (The one that checks for anitbodies that can give a false negative???) anyway he has told us to start a challenge in January and he will redo the blood tests and a biopsy in March. However he explained that if it is intollerance my dd may or may not out grow it...well by DD is clinging to this and keeps eating Gluten foods to see if she is better yet. Depending on what she has she will either get a severe stomach ache or not, but she always ends up hyper and then crashing with severe tiredness and general feeling unwell. No matter what I say to her she still does it. I have tried to explain the consequences but she is convinced she is going to outgrow it TOMMORROW! Has anyone had this? what did you do? I get so frustrated as she admits she sees how much better she is, and that she always feels ill when she eats gluten but she still does it again. I cant afford for us to have a completly Gluten Free house as the foods for her cost far to much, so there is often wheat bread at least in the house. If i have to I will have to go back to a fully gluten-free house as I did when she was first diagnosed but that nearly crippled my meagre finances and I am dreading the extra cost if I do. I finally have a little girl who looks well, can concentrate and can go more than two weeks before she gets a bug and ends up off school again (and her pot belly is gone!!). And I want to keep her that way so any adivce would be appreciated.
  10. Hi, This is a topic that really caught my eye. In April I put my daughter on a gluten-free diet after she had the blood test for Coeliacs, but before we got the results. The change in her was dramatic and after the result came back negative I tried her back on gluten with bad results, so I went back to gluten-free diet and went back to my fantastic GP. He agreed she had improved and we decided to leave her on it for a month to see if the improvement contiuned...which it did Well to cut a long story short he refered us to a specialist who agreed she was Gluten intolerant but he was unsure if she was coeliacs as the IGA??? antibody test hadnt been done (I think thats right the one that can effect the outcome of the test???) anyway he explained that there is no difference in the two except that an intollerance may disappear over time but a ceoliac will have it for life, he explained that you have to be Gluten intolerant to have Coeliacs but you dont have to have Coeliacs to be Gluten intolerant. In fact only something like 10% of Gluten intolerants will have ceoliacs (I think that was the right figure) Anyway by DD has her biospy in march after we do the challenge so all I know is she is Gluten intollerant and has improved dramatically since april!
  11. Hi I live in the uk and my dd and I are just imbarking on the road to discovery and i am just so confused. My DD is 9, and for about three years has suffered terrible stomach pains, and much ill health that the dr has only ever been able to put down to viruses. The last few months though she has got worse. Finally a heap of blood tests were ordered, one of which was for coeliacs disease. When I told my mum what they were testing for she told me that on her side there is a long history of celiac disease, so while I waited for the results of the bloods to come back (takes a week) I decided to go gluten-free...within a few days my dd improved, stomach pain stopped, colour improved and had more energy. But the blood test came back negative, so the next day I let her have wheat bread and within a couple of hours she was crying in pain. I but her back on a gluten-free diet for a week and again no stomach pain. Went back to the doctor after another week of gluten-free and he agreed that it could be an intolerance to gluten. He has told us to stay gluten-free for a month, while he gets in contact with a specialist to see what he has to say, but i am working in the dark as my Dr admited that he has no idea about Coeliacs and gluten-free as he has never had any other patients with it, if after a month she is still doing well he will refer me to a dietician, or depending on what the specialist says will refer me to them. The thing is there is no way I am letting her have an endiscope Sp? test as she has a fear of dr's (she was abused and was traumatised by a vist to a pead afterwards) So how will I ever really know if i am doing the right thing? I keep second guessing myself and wondering if I am imagining the improvements? It just doenst seem possible that the improvement could be so quick? and what if its just a coincedence and she gets sick again. She just keeps telling me with a big grin that she feels so much better she dosent care if she cant have real bread again (we both hate the gluten-free bread!) I am just so confused.
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