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greenbeanie

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greenbeanie last won the day on January 7 2019

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  1. Hi Claire, I haven't been on these boards much lately, but I just happened to see your message and wanted to follow up on my original post above (from 2013). My daughter was indeed diagnosed with celiac a couple weeks after that post, right around her fourth birthday. She had high positives for every test on the panel, and the diagnosis was confirmed by biopsy. It took quite a while for her tTG to completely normalize, but she's been doing great for the past few years. I have no doubt whatsoever that she would have diagnosed much sooner if anyone had tested her. (I also ended up wit
  2. Welcome, Jane! Those photos look different from the rash I get from gluten - but mine hasn’t been confirmed as DH by a skin biopsy, and I don’t want to hazard a guess about someone else’s rash based on photos, and risk misleading you. Hopefully your doctor’s appointment will be helpful! However, on a totally different note, have you ever been tested for a latex allergy? The locations you mentioned immediately brought that to mind. Completely aside from the rash I get from gluten, I have an IgE latex allergy. My elbows always get fluid-filled itchy bumps when I’m in a car with rubberized c
  3. It's encouraging that you stopped being so sensitive to gluten-free packaged foods with time, Victoria1234! I live in an entirely gluten-free household, fortunately, so we have no worries about cc here. My daughter and I both had trouble with gluten free foods made in shared facilities, even those testing below 20ppm, so we eliminated almost all packaged foods for quite a while. We do have some occasionally now, but only things that seem very low-risk (like small amounts of mustard labeled gluten-free that's not made in a dedicated gluten-free facility), etc. We've been doing that for more tha
  4. Thanks for your reply, squimingitch - and I'm so glad you're safe from Irma! You got me thinking about iodine again, and that may be the culprit. I had been so happy with the huge improvement after going gluten free that a little itch now and then was tolerable. But I haven't really been avoiding iodine aside from buying non-iodized salt, and maybe I've become more sensitive to iodine with time. At various points I have suspected dairy, fish, potatoes, eggs, and salad. I didn't realize until looking it up again now that potato skins are high in iodine, and I wasn't thinking of iodine as a
  5. Hi folks! For those with confirmed DH, do antihistimines make it worse? I'm trying to figure out an unpleasant puzzle. I've been strictly gluten free for over four years. It took a couple years of eliminating all processed foods for symptoms to resolve, but finally I've been feeling amazingly good for the past year. I have an official celiac diagnosis from a GI, and my daughter has biopsy-confirmed celiac, but my own diagnosis was on clinical grounds because I was unable to complete an adequate gluten challenge due to an awful reaction. I'd had an incredibly itchy DH-looking rash for ove
  6. 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 and for my own tongue swelling. By the time we ever got in to see a doctor, the problems had often improved enough that it looked somewhat unusual but not alarming. Then one day I thought to take photos, and voila! Suddenly they took it s
  7. Is it necessary to avoid sharing a toothpaste tube with a gluten-eater? My daughter and I have kept a separate toothpaste tube since her diagnosis. My partner eats gluten outside of the house and uses a different tube. This is easy enough to do, but sometimes if we run out or go on vacation or something, it would be easier for us all to share one tube. Obviously I won't do this if there's a real risk of cc - we've been very careful never to share toothpaste so far. But I'm wondering if I'm being too paranoid in worrying about this, or if it really is a necessary precaution.
  8. I would love to see more gluten-free products (especially breads, flour mixes, and pizza crusts) without xanthan gum. I bake at home with guar gum all the time and it comes out perfectly fine, but so many commercial gluten-free flour mixes and baked goods use xanthan gum instead. My daughter is fine with it, fortunately, but it makes my mouth burn and my tongue sting. From what I've read on here, this seems to be a fairly common intolerance, so it seems like there would be a market more more gluten-free products that were also free of xanthan gum - like brownie mixes made with guar gum instead
  9. The one I have now is a cal-mag-zinc vitamin with 500mg of magnesium oxide chelate. I don't know much about the ins and outs of different kinds, but I've tried several different magnesium supplements and they've all seemed to help.
  10. Has your magnesium level been checked? I had this kind of internal shaky feeling, and also hand cramps, for years. Another forum member recommended magnesium, and it made all the difference in the world. Come to find out, a blood test from when I was in the hospital years ago had showed magnesium deficiency, and the doctor hadn't even told me about it. I only found out because I requested copies of my all my old lab records because I was trying to figure other stuff out. After six months of supplements my level was back into the normal range, and I cut the supplements back to every few days in
  11. My daughter was conceived in a non-traditional way (with medical intervention), so we do not have full info about the other half of her genes. She didn't have the gene test herself because her celiac diagnosis was so clear. I am still extremely skeptical about my own test results, but at this point it doesn't make much practical difference. I'd certainly remain gluten-free at home anyway, for my daughter's sake, and pretty much all restaurant food contains seasonings, dressings, flours, or fermented things with sulfites. I do believe that someday a biomarker for severe NCGI will be found that
  12. Hi there. I've been following this thread but didn't post earlier because I'm not sure how helpful this will be, but I have a somewhat similar situation (and a partial solution that's helped me): I'm also negative for DQ2 and DQ8, though I have the alpha allele of DQ2.5 (and beta alleles of DQ5 and DQ7). Ignore that detail if it doesn't make sense - the genes stuff is complicated and not really relevant to my point. I had tons and tons of celiac symptoms since my teens (I'm 38 now), including diarrhea 4-6 times per day for 20 years, horrible itchy, blister rashes since I was five years old, an
  13. I would definitely get rid of the sippy cups, even if they are the kind with smooth silicone tops that can go through a dishwasher. My daughter is 4 1/2, and we had a totally gluten-free kitchen for the first six months. This was by far the easiest approach for us. Recently my spouse decided to keep a loaf of wheat bread at home, and that has made everything immensely more difficult. Although the bread is only used on a separate counter and we clean the toaster oven after each use, I'm still constantly worried about cc. I sometimes find crumbs on the hand towel that we use to dry our hands
  14. Welcome! My brain fog took a good three months to improve. My long-standing diarrhea, night sweats, and insomnia improved within days of going gluten-free, but impaired memory and coordination difficulties actually seemed to get slightly worse before they got better. Then I suddenly realized one day that I hadn't walked into any door frames or forgotten what I was doing in quite a while. It was great! I have celiac in the family but no clear diagnosis myself, so I can't say definitively that my neurological problems were due to gluten. However, I was hospitalized for ataxia in the past,
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