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Sienna2013

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

Everything posted by Sienna2013

  1. Sienna2013
    Sorry, is your only test result this one - "Celiac Disease DQ2 (DQA1 0501/0505, DQB1 02XX) - Positive"? IANAD, but that shows that you have the genetics - it doesn't show anything else. (About 30% of the population has the genetics. It's not the same as having activated into celiac.) If they've run blood labs, you can post your results here to...
  2. Sienna2013
    It can take a looongggg time to feel better. We have two celiacs in our household; both were off the charts at diagnosis, and now 18+ months later, are still well above normal (but now only by 2x or so), and both are feeling better but not awesome. Keep the faith, and keep to as clean a diet as possible. BTW, look into celiac camp and sign her up if...
  3. 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).
  4. 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? I imagine he is subconsciously trying to displace the guilt he feels onto you, but WOW that is not fair. My heart goes...
  5. 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 awareness, with the goal of saving other people from some of the pain our family went through over the decade between...
  6. 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, stomach cramps, and fibromyalgia.
  7. 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 behavioral and physical symptoms like those you describe), and it will be much safer for the celiacs in the household...
  8. 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 - according to our doc (who has her at 4 capsules daily, which is a little over full RDA), she may not be absorbing...
  9. 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 D, so we supplement both (magnesium glycinate from Pure Encapsulations specifically). She also swears by kombucha for its...
  10. 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. I wouldn't sugarcoat it or lie about it. She's old enough to understand the basic function (BeyondCeliac has...
  11. 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 (>3,000) and have registered results in the 300s and 200s (which would for you still show as "unknown number above...
  12. 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 indicator that all was well and didn't think of celiac - it was a psychologist who recommended screening in our case.) Also...
  13. Sienna2013
    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 3 capsules (= 90% of RDA) - Kombucha - she swears it is helping her stomach, and she doesn't like yogurt, kefir...
  14. 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 range to 15-20 overweight - and had a bizarrely insatiable appetite in the 6-9 mo leading up to diagnosis, among a...
  15. 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 when diagnosed). So, don't take a negative report as an all-clear - it's limited in scope, and honestly I wish their materials...
  16. 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 take the gluten-free diet (IOW: "wow, some celiacs sure are neurotic, they're making themselves crazy!"), or a completely...
  17. Sienna2013
    Aw, thanks, cyclinglady - high praise indeed coming from you!
  18. Sienna2013
    Parent of two celiac kids here. You are getting great advice; here are some things we've found helpful: - Give some real thought to taking the entire house gluten-free. It's just not worth the stress, for me, of worrying about cross contamination. Also, your other kids are at higher likelihood of having celiac disease, so you may end up 100% gluten...
  19. Sienna2013
    Thanks, Ravenwood! Good advice on all fronts. I will keep telling her "this too will pass - just wait it out." Hard to see her suffer though.
  20. Sienna2013
    Reviving this thread as I am in search of better care for my child, diagnosed this spring with off the charts antibodies. She experiences significant mood effects from gluten and all I get from her GI and ped are blank looks - they aren't familiar with the idea that it can affect one's mental or emotional equilibrium or brain. (I would bet that if we scanned...
  21. Sienna2013
    My 12yo daughter has similar reactions - irrational, looping behavior, rage-y. I can't tell if it's a direct effect of the gluten consumption on her brain, or if it's secondary, meaning that the gluten's effect on her stomach causes so much pain that her ability to manage her behavior is shot, but either way, it's terrible. Sympathies.
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