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greenbeanie

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Everything posted by greenbeanie

  1. greenbeanie
    My own experience has been that cc could cause MS-like symptoms even for someone without a firm celiac diagnosis. I too was tested for MS several years before going gluten free and getting celiac diagnosed in a first-defree relative, and MS was ruled out by a neurologist at the time. The balance and coordination issues had gotten so bad that I was walking...
  2. greenbeanie
    Update: Well, I'm kind of happy to report that all of this led to as close to a diagnosis as I'm ever likely to get! As I've written in a separate thread at https://www.celiac.com/forums/topic/111191-any-scientific-evidence-than-less-than-20ppm-can-cause-ttg-rise/ my daughter (with biopsy-diagnosed celiac) recently had a doubling of her tTG for no apparent...
  3. greenbeanie
    I don't have a solution to the lip problem (sorry), but I do have a suggestion for the dermatologist appointment issue: Take photos! If you can show the doctor a photo of how it looked at its worst, that may help them take it seriously, even if it's improved by the time you get in for your appointment. I found this very useful both for my daughter's rashes...
  4. greenbeanie
    I do not have a clear diagnosis (still), but I went through many of the same rounds of specialists and tests. My MRI was mostly normal, but I was walking into walls and falling down stairs almost daily because my balance and depth perception was so bad. I was hospitalized and they thought it might be MS for a while, but then decided not. I had classic celiac...
  5. greenbeanie
    Good luck! I hope it turns out that whatever it is, it's easily treatable.
  6. greenbeanie
    My biopsy was negative for celiac, and I had low magnesium and potassium years before (presumably from chronic diarrhea, though I had no idea what was causing it then). I also had low cholesterol on and off for years, despite eating meat, eggs, and a fair amount of cheese. I still had an abnormal fecal fat test after a full year gluten free, though subjectively...
  7. greenbeanie
    I'm wondering if the milk thing might be a fairly straightforward cc issue fom barley fodder blowing around in barns, even if the actual milk itself is totally digested and contains no gluten fragments. I've never worked on a dairy farm, but I have worked on a farm with other animals, and their hay and feed made dust everywhere! Seriously, it blew around...
  8. greenbeanie
    Update: I'm thrilled to say that her tTG dropped by almost half in less than a month! I removed that certified gluten-free flour with 7-9ppm cc traces, and also removed milk. Normally we wouldn't have checked tTG again so soon, but her GI ordered a re-check because we're headed to a celiac specialist soon and wanted the most up-to-date results. She has continued...
  9. greenbeanie
    Thank you both. The Lyme idea is interesting - I'll definitely ask about that. We do live in an area where Lyme-carrying ticks are common. I am super glad that we're getting a second opinion. Even if the new doctor doesn't actually have any additional ideas, at least I think we're already on our way to ruling out (or in) other associated problems, just...
  10. greenbeanie
    Basically, our current GI has only been willing to order tTG for follow-up. In the past two years she's only had vitamin D and ferritin tested once at diagnosis, and TSH once. He ran the DGP tests once after I'd asked many times, and they were negative, despite a continued low-positive tTG. No thyroid panel, systematic vitamin and mineral tests, no checks...
  11. greenbeanie
    Does anyone have experience with a child who has both celiac and juvenile rheumatoid arthritis? I'm wondering specifically about how/whether the arthritis can affect tTG-IgA levels. I know that other autoimmune diseases can cause a mildly elevated tTG, though most of the things I've read talk about type 1 diabetes and thyroid disease rather than RA. But I...
  12. greenbeanie
    Thank you, thank you! The citations in the FDA report are just what I was looking for! I'd found a few of them separately through PubMed searches, but this is by far the most systematic source I've seen with actual gluten levels and documented reactions discussed in depth. And it's somewhat of a relief to see evidence that yes, even some kids do react to...
  13. greenbeanie
    Go to a new doctor, as others have said! My daughter's tTG at age 4 was over 16x the upper limit of normal. They did not run the EMA, but both DGP tests were clear positives too. But her biospy "only" showed Marsh 2 damage. All of her doctors were surprised not to find more extensive damage on biopsy, given how high her blood tests were. Fortunately, we...
  14. greenbeanie
    My daughter was a few years older when she had her endoscopy (just turned four), but the whole process went smoothly. Definitely do insist that they draw blood (and also wait to insert an IV, if necessary) until she's already out. It should be easy to convince them of this, as it's much better for the nurses too. I'm not sure why they don't just automatically...
  15. greenbeanie
    Thank you both. That is the first article I've seen that discusses tTG values (rather than just symptoms) in situations like this - very helpful! She isn't even quite six yet, and it would be so incredibly isolating to do a completely whole-foods-only diet, given the million and one birthday parties and pizza days at school. Different treats are one thing...
  16. greenbeanie
    [Oops, title was supposed to say "thaT less than 20ppm"...] Does anyone know if there's reliable scientific evidence showing that some celiacs have a rise in tTG caused by gluten levels less than 20ppm? I'm wondering about actual antibody rises, not just symptoms. As I posted in another thread, my daughter's tTG had gone way down since diagnosis and then...
  17. greenbeanie
    Yes, all her labs for the last year and a half (the last four blood draws) were drawn at the same location and sent to the same place. Her original tests at diagnosis were from a different lab. But the tTG had been identical for the past three follow-ups in a row, until this recent more-than-doubling. The level is still much lower than at diagnosis, though...
  18. greenbeanie
    Thanks, Gemini. I think it's time for us to try Boston Children's Hospital. It's a bit overwhelming to go through another switch, another set of new insurance referrals and medical record copies, and another really long wait for an appointment (and long drive for appointments once we get in). And now that we finally have a doctor who at least listens instead...
  19. greenbeanie
    Thanks. It would be great if it were a lab error! But that's probably not too likely. We have checked all art supplies at school (and home). They don't use play doh, paper mache, pasta necklaces, or anything like that in the classroom at all. The glue brand and finger paints they use are gluten free. They only did one cooking project (with veggies only...
  20. greenbeanie
    I'm very discouraged. My daughter is almost six and was diagnosed almost two years ago. Her tTG-IgA was over 16x normal at diagnosis, and both DGP tests were positive then too. Her tTG fell all the way down to just barely positive within nine months, where it stayed for a year. Her GI would not run DGP tests for follow-up at first, despite repeated requests...
  21. greenbeanie
    My tongue got really swollen and painful during my gluten challenge (not bloody, though), and it didn't return to normal after. My doctors and dentist had no idea what to make of it, and no rinses, mouthwashes, etc. helped. I was already using a SLS-free toothpaste. It turned out to be a sulfite allergy/intolerance. (Note:Sulfites are different than sulfates...
  22. greenbeanie
    I too found this cookbook very helpful, even substituting for a lot of the dairy. We don't actually have any problems with dairy ourselves, but we've tried cooking for vegan friends so I've substituted applesauce for eggs, safflour oil for butter, etc. I just make my own flour mix (millet, brown rice, tapioca, and chickpea flours) and don't add the dry milk...
  23. greenbeanie
    I went back and found a few threads that may be relevant. Most are focused on younger kids, but some of the issues are still the same: https://www.celiac.com/forums/topic/109699-trying-to-figure-out-my-4-year-olds-joint-painbody-pain-issues/ https://www.celiac.com/forums/topic/107784-celiac-in-11-month-old/ https://www.celiac.com/forums/topic/10771...
  24. greenbeanie
    Welcome to the forum! I'm sorry I only have a minute to respond now - there's clearly a lot going on with your son, and I'm sure you'll get good advice here. I've just read through your story quickly, but it sounds VERY, VERY similar to what we went through with my daughter early on - from the extreme fussiness and screaming as a breastfeeding infant...
  25. greenbeanie
    We definitely found it helpful to get the DGP tests run for follow-up, as well as tTG. It was hard to convince my daughter's GI to order them, even after showing him the Univ. of Chicago recommendation. Both tests together really provided valuable information, though. Her tTG was still coming in as a "weak positive" after a year and a half with an extremely...
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