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greenbeanie

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Everything posted by greenbeanie

  1. greenbeanie
    It's been constantly swollen for over two months, and it gets better and worse slowly (but never goes away), so there's not any particular time when it seems like an emergency. Someone suggested that it may be angio lymphatic edema, so I'll ask the allergist about that. Or maybe just a general histamine intolerance that was somehow exacerbated by the gluten...
  2. greenbeanie
    I am recovering from a six-week gluten challenge. At the initial consult, the GI took one look at my rash and my long history of unexplained digestive and neurological symptoms and said that we have to do an endoscopy right away because she was almost certain I have celiac. We agreed that I should go gluten-free permanently right after the endo, regardless...
  3. greenbeanie
    Wow, sounds like you have a lot going on! I'm glad your doctor seems willing to order the tests. I also had a very strong (much worse) reaction when I resumed eating gluten for testing, and I'd only been gluten free for 12 days. My hair started falling out, ataxia worsened, intestinal symptoms and joint pain worsened, etc. At first I thought I must be imagining...
  4. greenbeanie
    Yup, I know how that is! Hopefully it will be over soon. The last two weeks of my gluten challenge overlapped with the first two weeks of my daughter's gluten withdrawal, and boy did we have a grumpy household! Hang in there.
  5. greenbeanie
    Overall, that's great! As for the sleep, is she seeming less rested, or is she just waking more frequently and sleeping less? If she seems rested enough, it may just take a while for her sleep patterns to readjust. (If she's waking more frequently, then YOU must be significantly less rested, which is indeed a big drawback...but hopefully one that will straighten...
  6. greenbeanie
    Thanks! There's a Target about 30 minutes from where I live, and it will definitely be worth the trip to get some!
  7. greenbeanie
    If it was the primary care doctor who ran and interpreted the celiac tests, I'd strongly recommend insisting on a referral to a pediatric gastroenterologist and speaking to them as soon as possible. The GI might want to do an endoscopy, and going gluten-free before all the testing is complete could cause false negatives. If you fax them a copy of the positive...
  8. greenbeanie
    Thanks for the try, anyway. We'd definitely use the Epi for any anaphylactic reaction; the Benadryl is just to keep in the emergency pack in case the Epi starts to wear off before we can get to a hospital. Maybe her allergist will know which of the store-brand fastmelts are gluten free.
  9. greenbeanie
    Does anyone know of a good dermatologist who is familiar with DH in western Massachusetts or the surrounding area?
  10. greenbeanie
    Gemini, where do you get them? Are you in the United States? According to Benadryl's website, they've been discontinued. I've been to a dozen different stores hoping to find some leftover packages, but no luck. I'm not sure how long ago they were discontinued, but all I can find are various store-brand generic versions with modified food starch as an ingredient...
  11. greenbeanie
    Good! It's great that you found a helpful doctor. I hope you see quick improvements!
  12. greenbeanie
    Does anyone know of a gluten-free brand of Children's diphenhydramine (antihistimine)? I'm looking for something either chewable or in pre-filled spoons that are individually wrapped. I know that there are no gluten ingredients in any Benadryl-brand products, but their single-dose liquid spoons seem to have been discontinued. I've found other brands of fastmelts...
  13. greenbeanie
    That's a tough one. I'm sorry you're in this position. I just did a six-week gluten challenge. It was awful, and it looks like I'm not going to end up with a clear diagnosis anyway. Prior to the gluten challenge I'd been gluten light for about 15 years, then totally gluten-free for 12 days (with amazing improvements after 30 years of rashes and 20+ years...
  14. greenbeanie
    I finally got a copy of my pathology report, and also my endoscopy procedural report. Here are the key parts: Pathology report 1. Duodenum, biopsy (4 samples taken): No pathological abnormality. Villus architecture preserved. 2. Gastric biopsy (1 sample taken): Antral type gastric mucosa with no pathological abnormality. 3. Esophagus biopsy (several...
  15. greenbeanie
    Rice Dream was the product that kept me from figuring out that my daughter has celiac much sooner! We'd tried rotation diets, food journals, and all sorts of dietary changes, but the one thing we never changed was the Rice Dream. She couldn't tolerate milk, so a nutritionist put her on enriched Rice Dream (for calcium) at age 1, and she'd had it every day...
  16. greenbeanie
    Does anyone know if it's meaningful to get large flares but no (or little) wheals on skin prick food allergy tests? Before all this business with celiac testing, I had allergy testing done. I've had many environmental allergies since I was a kid (to pollens, dust, animals), and those skin prick tests gave me clear results. But my food tests were strange....
  17. greenbeanie
    I'd been gluten-light for about 15 years (knowing that wheat made me feel sick but not suspecting celiac until recently), then was totally gluten-free for 12 days, then did a gluten challenge for six weeks before my endoscopy. I ate one medium-sized serving of wheat on most days for the challenge, and two servings some days. I felt so sick and my hair started...
  18. greenbeanie
    So sorry you are going through this. Has she been tested for celiac? If she hasn't been tested yet and you plan to, she'll need to be eating gluten until all testing is complete. It may be really hard to put her back on gluten for testing if she ends up responding well to the gluten-free diet, so if you think an official diagnosis might matter for school...
  19. greenbeanie
    I'd go for the tests now, or next time she's having blood drawn for any other purpose, as long as the doctor is willing to re-test her periodically even if the results are negative. You certainly might get a false negative at that age, but you also might get a positive - and if you do, it would be really great to catch it sooner rather than later! Especially...
  20. greenbeanie
    Thanks ravenwoodglass, Lisa, and Diana. Your support has meant a lot to me these last few weeks. At least my hair is falling out less now than it was during the gluten challenge, so that's certainly good. Plus, I've only smacked my head with the cupboard door once this week! So things are looking up. It is crystal clear to me that gluten is the source of...
  21. greenbeanie
    I am frustrated to tears again. After waiting four months to see a new PCP who would take my concerns seriously, then doing a horrible gluten challenge and waiting another two months to see a GI, I just got the letter that supposedly contains my endoscopy report. However, they didn't send me the actual pathology report or blood test results at all. All I...
  22. greenbeanie
    I tried a normal, similar bath (without Epsom salts) and nothing unusual happened. I do often take baths, and they've never made me nauseous before. An hour later I tried a foot bath in the salts, and I got all tingly and nauseous again! Weird. I'll try a foot bath with a much smaller amount next time, and see if I can work my way up. It would be nice...
  23. greenbeanie
    If your son is tolerating Alimentum well, that sounds like a good sign. My daughter had extensive digestive problems and moderate neurological problems starting when she was just a few weeks old and exclusively breast feeding. She still had problems even after I'd completely stopped eating dairy (though that did help a little bit). At five and a half months...
  24. greenbeanie
    Glad it went well! Enjoy your naps.
  25. greenbeanie
    This thread got me thinking that I should try Epsom salts in a bath, since I've had SI joint pain for decades that hasn't responded to other treatments (acupuncture, massage, cortisone shots, etc.). I put two cups in a full bath, as the package said. Within minutes, my feet got a painful pins-and-needles feeling, and my skin got very red everywhere that was...
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