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greenbeanie

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Everything posted by greenbeanie

  1. greenbeanie
    Thanks for the suggestion and info. I emailed the Chicago Celiac Center, and if they respond with any useful advice, I'll post it here. Sounds like this may just be one of those wait-and-hope-for-a-future-solution things, though.
  2. greenbeanie
    My daughter received all three standard Hepatitis B vaccination shots as an infant. She had definite celiac symptoms even then, but she was not diagnosed until age 4. She is doing great now, but I know that there are much higher rates of non-response to the Hep B vaccine among untreated celiacs (which she was at the time). Her doctor does not seem to think...
  3. greenbeanie
    I don't know if this is what you're thinking of, but many fruits are high in salicylates. I'm not aware of any connection between salicylates and celiac/DH, but before my daughter's diagnosis we discovered that a low-salicylate diet helped quite a bit with some of her sensory issues. Of the many, many rotation diets and other changes we made trying to figure...
  4. greenbeanie
    I'm not sure if this is still the case, since I haven't shopped at Trader Joe's since before the new labeling guidelines were passed. But we had some bad experiences with their "gluten free" store brand stuff previously - as in, stomach pains within minutes of eating their chicken stock and (on a separate day) within minutes of eating one brownie. Both were...
  5. greenbeanie
    Wow, that's quite the delay! We've had our share of negligent doctors too, but nothing that bad... My daughter was just diagnosed last June. So far we've only had one follow-up (blood was drawn after 6 months, but we didn't see the GI for a month after that). The current plan is to re-test her every 3 months until her levels fall into the normal range,...
  6. greenbeanie
    Thanks for the info, a1956chill! And good luck figuring things out, meg51577!
  7. greenbeanie
    My daughter is 4, and her tTG-IgA is taking longer than I'd expected to come down too. Her level was over 16x the normal value at diagnosis. (It was 65 on a scale with 4+ as positive, which I believe would be about equivalent to 320 on a scale with 20+ as positive; there's another thread I posted about it a couple months ago. Her doctor had been shocked at...
  8. greenbeanie
    This is really interesting. I was told I have Gilbert's Syndrome as a teenager, around the time my daily diarrhea and stomach pains started. They repeated the blood test a few months later and indirect bilirubin was still high (leading to high total bilirubin). As far as I know, that's all they did to diagnose me with Gilbert's. I had no idea there was a...
  9. greenbeanie
    I would also recommend getting him tested. Though a blood draw is no fun with a little kid, if the results give any indication of celiac it could turn out to be really important later to have proper follow-up covered by insurance. As for the urinary frequency issue, my daughter and I both had that. We'd both have to pee several times an hour, all day long...
  10. greenbeanie
    My daughter had many of the problems you describe, starting shortly after she was born. In her case, reflux medication actually seemed to make it worse, though. We actually took her off it after a few weeks because it increased the vomiting. I wonder now if the medication contained gluten - it was a generic brand, and celiac wasn't on our radar at the time...
  11. greenbeanie
    We went a few weeks after my daughter was diagnosed, and by that time I already knew all the important stuff. However, it was very helpful to get the inside story on local restaurants, and also to get specific vitamin brand recommendations. It was worth going for that alone. But having said that, I probably wouldn't have found it worth the money if our insurance...
  12. greenbeanie
    I have no scientific evidence to back this up, but I personally am completely, totally convinced that celiac can be triggered by gluten in breastmilk. My daughter had a traumatic birth and was put on IV antibiotics for her first week of life. I exclusively breastfed for the first five and a half months. On the day my breastmilk came in, my daughter began...
  13. greenbeanie

    ARCHIVED Tingling

    greenbeanie replied to KCG91's topic in Related Issues & Disorders

    It sounds funny when you say it like this - but you seriously may be in for a very pleasant surprise once you've been gluten free for a bit longer! I used to walk into walls ALL THE TIME. I don't even know how to describe it...I'd just be walking through a regular doorframe, and the entire left side of my body would smack into the wall instead! My whole arm...
  14. greenbeanie

    ARCHIVED Tingling

    greenbeanie replied to KCG91's topic in Related Issues & Disorders

    I had tingling in my leg, and sometimes in my arms and hands, for years. Sometimes I had a shaky low-blood-sugar-like feeling in my whole body too (and food didn't help). Magnesium worked wonders for me. Someone here recommended it, and within days the shaky feeling and most of the tingling was gone. I went back and found old blood test results from a hospital...
  15. greenbeanie
    I would also try to bump up the appointment. If they're booked solid, maybe they could at least give you the lab slip to get the follow-up bloodwork done sooner, which might help sort out whether it's a cc issue or something else. They could call with the results even if you can't get in to see the doctor until late February. If this is the first bloodwork...
  16. greenbeanie
    This probably doesn't help much since I don't have a clear diagnosis either, but I was hospitalized for ataxia a few years ago and had lots of symptoms of MS. I was 35 at the time. I was told that my MRI was normal, though I was pretty out of it and didn't read the actual report. I was discharged from the hospital after a few days with no cause found for...
  17. greenbeanie
    I am feeling much better about her results now that I realize (from info on another thread) that her tTG level actually was very high at diagnosis, especially for a young child. I'd been seeing that some people had numbers over 100, so I'd thought that in comparison 65 wasn't all that high, which led me to expect it to come down to normal more quickly. ...
  18. greenbeanie
    Your comment about Band-aid related hives jumped out at me. This is not related to celiac, but could he be allergic to latex? Many Band-aids have latex in them. My daughter and I are both allergic to latex. I used to get rashes all the time around the waistband of elastic shorts, from cheap bathing suits, and sometimes from touching rubber things. (Most elastic...
  19. greenbeanie
    My daughter was diagnosed with Sensory Processing Disorder around age 3, but she'd had sensory issues her whole life. She was very slow to lose her infant reflexes, and at one point a neurologist thought she might be having seizures or might have mild cerebral palsy. Her reflexes were over-active in many ways, but the extreme sound sensitivity was the worst...
  20. greenbeanie
    I had awful SI joint paint for twenty years, with no swelling. My skin in the area felt hot to the touch. I had six cortisone shots over several years, and also tried physical therapy and yoga, and those things hardly helped at all. The worst pain seemed to correspond to when the lymph nodes in my groin were swollen (which happened often for unknown reasons...
  21. greenbeanie
    Welcome to the forum! It's a very stressful process, but I hope you get clear results. My daughter did not have damage visible during her endoscopy, but her biopsy came back positive (at age 4). With multiple positive blood tests, it certainly sounds like celiac. Our diet was much like yours beforehand - really not all that much gluten on a daily basis. I...
  22. greenbeanie
    Thank you so much for the exceptionally helpful and thorough explanation! That makes total sense. Welcome to the forum, and thank you for registering in order to post this!
  23. greenbeanie
    This made me chuckle...It definitely seems true of the allergists I've seen. I suppose if you're used to dealing with people in anaphylactic shock, anything less dramatic might seem boring. I've been following this thread with great interest. I realized a few weeks ago that a sulfite intolerance has been making me miserable. My tongue swelled up during...
  24. greenbeanie
    I have a general question about how reference ranges are calculated for tTG-IgA. Is the difference just that some labs are more conservative than others in terms of what they consider normal? Or are test results from different labs not comparable at all because they use different processes or measurement techniques? Do different results from different labs...
  25. greenbeanie
    Thanks, Nicole. She had both DGP tests run at the time of diagnosis (but not EMA), and I had thought they were running all three again for the follow-up, but it turns out they didn't. I'm sure the move to electronic medical records has advantages for efficiency, but it's annoying that patients never get to see their actual lab slips anymore! I'll try to get...
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