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kookaburra

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by kookaburra

  1. kookaburra
    My son was treated with diflucan (for yeast) and this helped a lot.
  2. kookaburra
    They all came back negative except for the IgG one which I was told means it was inconclusive or negative however you want to look at it. My son was gluten lite when he took it and those #'s were high then I put in on a high gluten diet and those same #'s were still high. He has a ton of GI symtoms so we were told and decided to challenge him on the gluten...
  3. kookaburra
    I just noticed your description of your genes and wondered if you could help me out here. Prometheus listed my son's gene/s as DQB1 06 (DQ6). How do I read that? He that double. Is that the same as 0106? Does that mean he is a double DQ1? Are these genes associated with anything? Thank you so much. I cant' figure out how to read this thing to...
  4. kookaburra
    I grind flax seed in a small grinder (for spices) and put a jar of it in the freezer. I take one tablespoon/day for a while, as long as needed and it works wonders. I started using that because I couldn't tolerate psyllium husk. It actually tastes ok, too, especially with soy milk or other milk or in yogurt.
  5. kookaburra
    What is the test for casein intolerance? Thanks!
  6. kookaburra
    sounds like vaginitis, probably of the yeast infection type. The gluten filled diet is yeast encouraging.
  7. kookaburra
    My son's results from Prometheus for the gene test read as follows: HLA-DQB1 06(DQ6) HLA-DQBQ - (DQ-) the - indicates homozygosity or unidentified allele. How do I read this? Is he a double DQ1? Or is he a 0106? Or is he a DQ6? What is homozygosity? And are these genes indicative of anything in particular? Thank you so much for your...
  8. kookaburra
    That's interesting that you should say so, because he is actually a double DQ1. When I happened upon celiac as a potential diagnosis, I was actually excited (I hope that doesn't sound too terrible). But there is this family history of extreme IBS, and accompanying neurological stuff. I thought I had solved so many mysteries, why those relatives became...
  9. kookaburra

    ARCHIVED Angry Boy!

    kookaburra replied to Kelgs's topic in Coping with Celiac Disease

    My 4yo son on gluten responds as if he has Aspergers while on gluten. He does not respond when spoken to, has a high level of anxiety, misinterprets social cues, and has extreme sensory issues (screams when he takes a shower, when you brush his teeth, etc. Wears a hat, gloves, and footy pajamas in order to be completely covered ). He also loses his skills...
  10. kookaburra

    ARCHIVED Angry Boy!

    kookaburra replied to Kelgs's topic in Coping with Celiac Disease

    My 4yo son on gluten responds as if he has Aspergers while on gluten. He does not respond when spoken to, has a high level of anxiety, misinterprets social cues, and has extreme sensory issues (screams when he takes a shower, when you brush his teeth, etc. Wears a hat, gloves, and footy pajamas in order to be completely covered ). He also loses his skills...
  11. kookaburra
    My son is double DQB1 (only one was identified, it was 06). Let me know if you learn anything more about double DQ1! My son has classic celiac symptoms including heavy on the neurological symptoms, but I've been told since he doesn't have DQ2 and DQ8 that he doesn't have celiac. I think there is some debate on this, but I'm unclear on it...
  12. kookaburra
    My son does not like the rice milk or the almond milk, but he does like Hemp milk, especially the vanilla. I've also heard about potato based dari free milks. Finally, some people drink coconut milk, and I hear it's best fresh from the coconut. From experience, I know the canned varieties -- some are more subtle and some tastes stronger (like suntan lotion...
  13. kookaburra
    I can only share my experience with my 4yo -- when he eats gluten, he gets many sensory integration issues including OCD. He is 4 so I'm assuming the manifestations are a bit different for him than adults, but even his teacher who has seen him on and off gluten has reported as such (and I've intentionally not reported when he's been on/off so as to get a...
  14. kookaburra
    So sorry you were ill.. for whatever it's worth, my 4yo has a lot of allergies but the only time his poop turns that flourescent yellow is when he's been glutened (including oats). I guess it's a good indicator which I should appreciate in a weird sort of way.... Easier than just fixating on the behavioral signs.
  15. kookaburra
    My son (4yo) had what were either seizures or severe migraines last spring. He has the classic symptoms of celiac, and when we took him off gluten the effect was remarkable. Beyond belief. We've tried a gluten challenge 2 more times with obvious results. Here is the kicker, though, his blood panel came up negative (he was already off gluten then so that...
  16. kookaburra
    I don't think it could be rice milk... Both times were after purposeful ingestion of RAST tested oats (fairly high quantities). We were both hoping those were ok for him, oat flour is so tasty and he loves oatmeal. By the second exposure, actually, he had pretty much completely changed over to Hemp milk and wasn't drinking any rice milk. (I always picture...
  17. kookaburra
    I think that's where we settled with it. Your common sense makes sense. It would be so darned helpful, especially with school & in-laws & pediatrician though, if we had that piece of documentation. And how hard it is to be worried about factory cross contamination, shared toasters & utensils, & crumbs (as I've heard reference to) without...
  18. kookaburra
    For my son it only took five days or so to change from that weird white yellow to a more mustard (more "normal" looking yellow). It will keep changing if he stays off gluten... After a couple of weeks it will go from mustard to brown. I wouldn't say it looks normal even when it gets to brown, it has "ragged edges" which I've been told is malabsorbtion...
  19. kookaburra
    I could be wrong here, but I was told to look out for that kind of thing for pinworms? Anyone know? What do tapeworms look like? One of them was described as looking like rice.
  20. kookaburra
  21. kookaburra
    I started with bloodtesting my son for allergies. They are considered poor for accuracy. Some doctors I know have sent in double blind challenges (the same blood under two assumed names) and gotten back very different answers. It might be worth doing some poking around to check about the lab's accuracy before you settle on one. That being said... ...
  22. kookaburra
    I'm hearing about celiacs being intolerant to food other than gluten. I think I understand the milk intolerance (the damage causes lactose intolerance, but can reverse after a gluten free diet and after the stomach has healed for say 6 mos or so?) but what about the other common ones? Can these be identified by IgE (immediate allergy) or IgG (delayed...
  23. kookaburra
    My son has classic celiac symptoms. We've done the gluten challenge, which overwhelmingly has confirmed it. We've challenged it twice (with oats), ad he responds like a celiac. It seems so incredibly open and shut, yet he has had a negative Prometheus gene test. Anybody out there had a negative gene test then later tested positive for Celiac? thank...
  24. kookaburra
    For my son yellow poop means that he has been exposed to gluten. When he goes off gluten, it takes about 5 days to turn back to brown. Also night waking.
  25. kookaburra
    My son experienced the same thing. To get us through the first few months, I found two things to be quite helpful in settling his stomach. One was probiotics at bedtime. Mainstream studies are popping up all over the place confirming that it actually works to support gastrointestinal distress. Although beware that people with milk sensitivities (as many...
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