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kookaburra

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About kookaburra

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  1. My son was treated with diflucan (for yeast) and this helped a lot.
  2. 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-free diet. I basically am trying my best to treat him as tho he is truely celiac....we have had a few mishaps with cross contaiminations. But he is looking a bit better. The couple of times before we went strict gluten-free I gave him non gluten-free cookies or gold fishes and he instantly complained of tummy pain. My son is 3.5 yrs old. I have no doubt my son has a gluten intollerence...whether or not it is celiac is where I am stuck. I would love to get the gene test done but my doctor has swayed not to. We're in the exact same boat (no positives except moderately high IgG). He has improved so much gluten free, but it is frustrating not knowing definitively. Have you made any other discoveries? Our son was treated for yeast, and the response was very positive. I guess that is controversial, though.
  3. 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 use the information and to relate it to the research!
  4. 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. What is the test for casein intolerance? Thanks!
  6. sounds like vaginitis, probably of the yeast infection type. The gluten filled diet is yeast encouraging.
  7. 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 help -- I have no idea how to read this.
  8. 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 so food intolerant, had malabsorption, etc. I hope in the years to come they will do more studies about gluten intolerance. They seem pretty slim so far. I've been following your thread about lyme a bit. Same thing there -- chronic lyme is terribly understudied. Hope you are feeling ok these days.
  9. 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. Off gluten, he is very very smart, scarily so. I'm still trying to wrap my brain around this. He has (obvious) gastro symptoms on gluten, too, but is not DQ2 or 8 positive (he is a double DQ1). I'd love to hear more about your situation.... I've been told by a doctor who thinks outside the box that in has case it is a leaky gut problem, too. That he can't just stop eating gluten, that we need to address the bacterial overgrowth in his gut, a persistent yeast problem, and food allergies. But the Asperger type symptoms disappear simply when he goes off gluten. Like night and day.
  10. 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. Off gluten, he is very very smart, scarily so. I'm still trying to wrap my brain around this. He has (obvious) gastro symptoms on gluten, too, but is not DQ2 or 8 positive (he is a double DQ1). I'd love to hear more about your situation.... I've been told by a doctor who thinks outside the box that in has case it is a leaky gut problem, too. That he can't just stop eating gluten, that we need to address the bacterial overgrowth in his gut, a persistent yeast problem, and food allergies. But the Asperger type symptoms disappear simply when he goes off gluten. Like night and day.
  11. 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. 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 smells). I prefer the more subtle. Good luck!
  13. 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 totally unbiased opinion). It's truly remarkable how different he is. On gluten, i'm sure he would end up on ritalin or anti-depressents. Off gluten, there is absolutely no need. On gluten, his anxiety level is out of control. Even in his sleep, and his dreams! It's incredibly intense, and sad to observe. I'm still trying to wrap my brain around it all, as it seems so science fiction but I can't deny it's quite an open and shut case when you observe him... I guess if gluten is a neuro toxin to celiacs, then it makes sense.
  14. 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. 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's to be expected). But his gene test came up negative and I've been told by a few doctors that he absolutely can't have celiac. I wonder if there are any other diagnosis that could fit? Try the gluten challenge... if your experience becomes similar to ours, there is no mistaking the difference. I'd love to hear how your situation progresses as it is similar to ours...
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