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Sienna2013

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Sienna2013 last won the day on October 26

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  1. Sienna2013
    TBH I would consider reporting this doc to the medical board (*after* you've found a new one and gotten your daughter properly cared for).
  2. Sienna2013
    I can't believe your husband is blaming the T1Diabetes diagnosis on you! (I noticed you said "my" changing his diet, not "our" changing his diet.) This is the same husband who is a diagnosed celiac yet opposed screening the kids, right?...
  3. Sienna2013
    I second Beverage's comments, and wish you strength. FWIW, my kid was heading toward being hospitalized for psych issues before someone finally thought to screen for celiac. Part of the reason I'm active on this forum is to help raise...
  4. Sienna2013
    PCP and husband both displaying questionable or just plain bad judgment, IMO (not a doctor, just a parent to celiacs). If your husband has low-level ongoinggluten exposure at home, seems like that could be contributing to the joint pain...
  5. Sienna2013
    I'd suggest screening them all (as noted above, screening all first-degree relatives is the standard of care when someone is diagnosed) *and* going gluten-free whatever the results. Odds are that one or more has active celiac (it can cause...
  6. Sienna2013
    @Ecgmmom - At least you figured it out when she was 7 - took us until 12 Not a doctor, but based on the muscle tension mine experiences I would say test out magnesium supplementing. Magnesium glycinate, a couple of capsules with meals...
  7. Sienna2013
    No specific recommendations, but you might look into finding a functional physician - they'll work with you on nutrition. In case it's helpful, my kid has psych effects from gluten; she also is likely low on magnesium and def low in Vit...
  8. Sienna2013
    Plus one to Teagan's response that this might help her anxiety; long-undiagnosed celiac disease turned out to be a significant factor in my DD's anxiety (age 11 at diagnosis, now 12), and she's slowly improving the longer she is gluten-free...
  9. Sienna2013
    Is it possible that your lab's TTG-IGA test's ceiling (250) is low enough that it's making it hard to measure your progress? At our lab, the ceiling is 3,000; my kids were diagnosed around the same time as you with results over that ceiling...
  10. Sienna2013
    FWIW, our ped GI was firm that all first-degree relatives needed to be screened, whether or not they were symptomatic. (Our family is tall too - in fact, our kids' continued growth delayed their diagnosis because their ped took it as an...
  11. Sienna2013 started following Help with Not Feeling Crazy
  12. Sienna2013

    Need Neurology Recommendation SF Bay Area/Peninsula

    Sienna2013 replied to AWC_California's topic in Celiac Disease - Doctors

    Updating: while her levels are not yet down to normal, she is improving. Things that seem to help: - Time - Strict gluten-free diet (obvs) - Supplementing Vit D and Magnesium (we are currently supplementing magnesium glycinate...
  13. Sienna2013
    Sharing my experience: both of my kids (K1, girl, then 11, and K2, boy, then 10) were diagnosed within a month of each other last year, both of them with off the charts TTG IGA levels. Kid1 had been putting on weight - went from average...
  14. Sienna2013
    It's not error-proof and doesn't test all variants; it reported, correctly, that I have one of the variants, and kid2 has one of the variants, but kid1's report did not note a higher risk (and she is oh-so-celiac - off the charts TTG IGA...
  15. Sienna2013
    The coverage of this study irritated me (to be fair, I haven't read the underlying study itself) because from the news articles, it is not possible to tell whether the extreme vigilance is just individual variation in how seriously people...
  16. Sienna2013
    Aw, thanks, cyclinglady - high praise indeed coming from you!
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