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stanleymonkey

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  1. back from our original gastro, told him everything that is going on and it turns out that the gastro who is supposed to be the department head never told us that she has the celiac genes. Given how she first responded when we went gluten free, it is a good bet she has celiac, no endoscopy or anything needs to be done.

    rash is probably DH, and sister has same rash so keep her gluten free too.

    she is probably just more sensitive to gluten now she is Gr, but hey that's life I guess

    if you need a ped gastro in British Columbia Canada ask to be referred to Dr mark riley, he is the only one who hasn't dismissed my concerns

  2. thanks for everyone's suggestions,

    her little sister has started having the same sort of bowel movements that got us concerned about the eldest bad as it would be maybe notary youngest one has the same issues someone besides our original gastro might start paying attention and help us

    today her spots are back on her face and bum, and her vagina is really red even though she is pottyntrained , and her belly seems more swollen on the right of her belly button and she is constipated even though she is back on the PEG

  3. went gluten free with our nearly 3 year old a month or so ago. We had a great start, I had my beautiful happy healthy monkey back. Now she is even worse, slowly she started getting bloated again, although to the extreme as before, no appetite - or unbelievably ravenous, vicious moods, bizarre behaviour, rash around her mouth when she eats anything ( seriously anything), constipation, pale skin, looks exhausted

    we have seen the head of the gastro dept at the local kids hospital and he diagnosed her with intermittent diabetes due to nerve damage caused by a virus and told us to go back to our original gastro if we felt we needed to see someone for follow ups. We see this doc on Monday but doubt he'll be able to do anything as his boss has pretty much dismissed us

    its destroying our whole lives, we can't go anywhere, I take her to preschool but only because she is so exhausted to misbehave, family think she is just naughty and we are bad parents

    we don't know what to do

    she is definitely gluten free, all celiac tests and tests for all related conditions well within normal ranges

    she has no deficiencies

    she is dairy and egg free due to anaphylactic allergies,soy free on a hunch, no salt, nightshade

    any ideas?

  4. some doctors don't get it, the head of the GI clinic at our children's hospital silt the firm belief that if a child is not malnourished, and has no evidence of anything in the bloodwork than absolutely nothing is wrong, but our regular GI and our pediatrician don't care what blood says, they look at the physical evidence. We have been told we can't get an official diagnosis of glutenintolerance as there's of the GI clinic downs't believe it exists.

  5. we are 2 days in with our 35 month old, and she is so much better already, she has gone from being aggressive whiny and clingy to almost back to how i remember her 2 yrs ago.

    today iwen to fold the laundry and she happily played by herself instead of crying and following me

    when one of her toys didnt do as she wanted, she started to cry and i told her to stop and calm down, normally nothing would work and we would have a screaming fit all day long

    she has stopped begging for food and had eaten 3 meals and three snacks, not asking for anything other than the stuff i gave her

    she has taken herself to the bathroom and not needed help or soiled herself, she pooped withut the need of PEG

    she even helped dress her sister

    i guess it depends on how much damage is done, she has dropped a pound in weight in 1 day which i'm sure was mainly water and she is tired, but so far so good

    keep us posted

  6. the specialist at our local childrens hospital told us our daughter in no way had issues with gluten as her ttg was normal the two times it was tested, and the fact she was growing

    well we decided to trust mommy instinct, and 2 days gluten free i have my happy, spunky, funny 2 yr old back, no 2 hr tantrums, no clinging to my side

    we are going back to our original gastro, he suggested gluten-free no matter what the tests said, and he was right!

  7. i'd keep away from the berries, there may be too much acid for his stomach

    if you google foods that are the least like to cause allergies it should bring up lists, pretty much when you start feeding a baby. everytime my daughter gets sick we do it and it seems to help, make sure even the fruits are soft, you can poach them, also steamed chicken with little ginger. try making your own stock and let him drink it. my MIL is chinese and swears by boiling rice and saving the water to drink, then cooking the rice again with stock till it turns to mush (congee)

  8. have they checked for eosinophillic gastroenteritis? Our allergist thinks our daughter may have it as her allergy numbers are crazy high but we never give her any of the things she is allergic to as she has anaphylactic allergies.. Our allergist said people can have too many IgE cells and their body starts to treat everything as an allergen, our daughter has an allergic reaction if she gets a fever above 100

  9. we need to a diagnosis of what's wrong as there are so many mother things it could be as there are so many autoimmune issues in the family

    also extended medical an schools will only cooperate with an official diagnosis

    gluten free is not working she is dairy and egg free due to anaphylactic allergies, we just want to know what is going on

    her allergist noticed that her I'Ve levels were crazy high so she wants them to scope her to check for eosinilhilic gastritis

  10. we were referred by our gastro to gastro clinic at our local kid hospital (daughters history on earlier posts) he wanted new doc to scope to see what is going on inside

    we were given a diagnosis by new doc of intermittent diarrhea , told to give Zantac for reflux, no follow up, no directions on meds, told to buy it over the counter, try giving a 2 yr old a tablet! He says she probably has nerve damage from a virus, this kid has been sick 3 times her whole life (flu, tummy bug, group all AFTER the tummy troubles started) and nothing else we done as all blood work is perfect

    so frustrated and unsure of what to do, meanwhile the big d continues and she is being thrown out of preschool as she can't stay awake

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