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beebs

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Everything posted by beebs

  1. beebs
    Eeeppp! The false neg in children and babies is even far higher than the 20-30% in adults. My 17month olds bloods came back completely negative but our Paed GI did not care - he is still getting an endo, he places no weight in those blood test for babies.
  2. beebs
    That is so good mate! I am so glad to hear it. Its hard to make others see just how dangerous it can be. So its great he has changed his mind!
  3. beebs
    Only 7% of people have gastro issues at all with celiac (it depends on which med study you read - some say 5% some say %) So I'm not really sure what the other 93% of people are sposed to do? My granddad vaguely felt sick in the tummy alot but nothing else and then developed bowel cancer at 48. Which he died from. Also - my mother thinks she had suffered...
  4. beebs
    Your story sounds so much like mine! My son started getting loose, pale stools at the end of 2009 when he was 3. It just went on and I could see he was getting really sick. He ended up severely anemic and developed a heart murmur because of it. My mother is celiac. I have been struggling and fighting with the medical profession to take him seriously...
  5. beebs
    I know, sorry - I should be patient!! But its more to bounce off ideas with you guys cause you know so much I typed in google "high ESR and low zinc" which were the only two things that were weird on his bloods (this time) The first things that comes up is Malabsorption issues It comes up with page after page....hmmmmmm At other times this year...
  6. beebs
    My 4 year old DS had his endo a couple of weeks back, he went gluten free straight away. The Paed GI said he couldn't "see anything, but often you can't with Celiac" But would you say that means that the damage isn't bad if it is that? Only reason I ask is because I'm not noticing any big changes so far with the diet. The only thing I have noticed...
  7. beebs
    The statistic actually say 99.6%, so that is 1 in 200 coeliacs that don't have the two common genes. But apparently there are more than just the two genes. They say there are 27. Yet they don't test for those in some countries. So I guess the question is - if you are from those countries how would you even know if you had an associated gene?
  8. beebs
    To answer the question. My mother is diagnosed. Her dad was diagnosed with bowel cancer at 48 after a whole life of "sickly tummy episodes". My two children are showing symtpoms. I am waiting for the results of an endo for one and the other has an endo scheduled for two weeks time. I have tested neg and don't have the two most common genes. I have all...
  9. beebs

    Trying to understand how this forum works.

    So It similar to facebook? You can write notes, and you add friends? Too funny, had no idea.

  10. beebs
    I am shocked about the bilirubin - mine is through the roof. The plot thickens! Gilberts is kind of like a non syndrome - it doesn't do anything bad and I kind of get the feeling it might be like IBS - ie that tell you that you have it when they don't actually know what is going on.
  11. beebs
    She tested me for RA and Sjogren's, lupus and even that gene that causes joint problems...is it B27 or something? All negative. I was only tested for the two genes, not even sure if they did a celiac panel or not. I've had so many tests in the last year I have lost count. I have lost 50 pounds in about 18 months - that is the only good thing about this ....
  12. beebs
    yeah - the Coeliac society says when its processed to that degree that there is no detectable gluten whatsoever. If we can't trust them - then who can we trust. Okay - Most of Ben & Jerrys is also gluten free an cadburys roses are completely gluten free. Watch out for their other stuff though cause some of it does have gluten - they have a chart...
  13. beebs
    I have been seeing a rheumy for 4 years with a mish mash of crazy symptoms. Basically she is treating me with plaquenil but doesn't know what I have or why. Doesn't seem to matter that I have a family history of celiac. I have psorisis in my nails and arthritis although nothing connected or diagnosed yet - the best we can hope for it "Undefined Connective...
  14. beebs
    Is high bilirubin a symptom? Mine is through the roof as well as elevated liver enzyme but my dr thought it was probably gilberts syndrome- don't know why - I have never shown any other symptoms of gilberts.... Sorry for the hijack
  15. beebs
    Yes but with 300 odd associated symptoms its hard not to! I have that chicken skin thing on my arms and legs too - I have only been gluten free for 3 days (and am undiagnosed at this stage) so it'll be interesting to see if that goes away!
  16. beebs
    No worries! There are some links included down the bottom ! If you google breastmilk and lactose. Every website that comes up says the same thing. Lactose is in breastmilk because we are mammals - all mammals have lactose in their milk regardless of if they eat it themselves or not. It really depends on how bad your intolerance is - some babies are...
  17. beebs
    I have since found out they need 2 slices of bread a day - not sure if my little one is getting anywhere near that. But he has never been gluten free- so maybe it won't matter that much?
  18. beebs
    Thats a good way to think of food, killing or picking off a tree. It's soon to be 4 boys for me:)
  19. beebs
    thanks!! Here it is? Not sure if we are allowed to post links? Sorry if we aren't Open Original Shared Link
  20. beebs
    Doh - I haven't taken him off dairy at all. I even know that Celiac can cause lactose intolerance and it just didn't occur to me. My younger son who is having his endo on the 20th is badly lactose intolerant. Do you think its enough to go lactose free instead of dairy free?
  21. beebs
    Oh and the nose ulcers - soooo painful and take ages to clear up... I always thought DH was itchy and like a rash...could it ever just affect your nose?
  22. beebs
    17 month old twins actually The problem is one of them has been unwell since I can remember really - his endo is booked for the 20th of jan and I really really don't want him coming up negative if he is Celiac so I am trying to get him to eat as much gluten as he can...which isn't much to be honest - he won't eat bread, cookies or granola bars anymore ...
  23. beebs
    My 4 year old had his endo just before xmas so we decided to get him gluten free before getting the results back which will be on the 12th. We are not sure that gluten is the problem, he has never been gluten free before and he has never had any kind of intolerance/allergy testing. We have a family history of celiac. He has been gluten free for 5 days...
  24. beebs
    Thanks so much for your post:) And thanks for your help! I've had one day gluten free - its harder than it looks - trying to keep gluten in my 17 month old but not contaminate the non gluten food. When you got DH in your nose did it itch though? The ulcers I get are just really painful. I don't have it all the time, but I get or two every month...
  25. beebs
    Yes - I asked about donor milk at the hospy and they said no way - only for premmie babies. There are so many women willing to do it. It seems crazy to me
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