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Avalon451

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Everything posted by Avalon451

  1. Avalon451
    My 16 y.o. had NO gut issues when she was diagnosed with DH by her dermatologist. We thought we were looking at psoriasis, celiac wasn't even on the radar. She was seeing the derm for her acne issues (now clearing up amazingly on the gluten free diet) and mentioned as an aside about the itchy rash on her knees, elbows and back. She had a way positive blood...
  2. Avalon451
    Thank you so much for your encouraging and comforting comments. I'm feeling better today. Well, whether or not I am officially diagnosed, I am already seeing some issues resolving, just 5 days into the gluten-free diet. That ought to be good enough for me. And if my daughters are healthy and doing fine on the gluten-free diet, that's all I really need...
  3. Avalon451
    Ugh. So frustrated. Normally I'm upbeat and I deal with setbacks with a good attitude. Even if I feel bad I hide it so I don't scare my kids. But I'm kind of in a cascade this weekend with the whole celiac/ gluten intolerance/life changing thing. My GI doc thought I had celiac for sure, after my endoscopy last Tuesday when the cobblestone look to...
  4. Avalon451
    So my biopsy results came back today. My GI was sure I had it, because of my extensive symptoms: D for 7+ years, digestive issues ever since I can recall, achy bones, optical migraines, peripheral neuropathy, depression... and my daughter tested positive on blood, skin biopsy for DH, and endo biopsy. My other two daughters both have bloods indicative of celiac...
  5. Avalon451
    You could do an elimination diet for a couple of months (get back to just plain meat and veggies), let things heal up and settle down, and then add stuff back in one by one to see what's bothering you.
  6. Avalon451
    Ugh, so sorry to hear about your horrible psoriasis! How frustrating. Well, here's the place to bellyache, we all understand! I certainly do enough of it! I dunno, I'm thinking about doing a full-on elimination/cave man/ rare foods diet. Open Original Shared Link I kind of get what he's saying about how your body is stressed out from the inflammation...
  7. Avalon451
    Hi, welcome to the boards! You said your biopsy came back normal. Were you referring to the biopsy from your colonoscopy in December, or did you have an endoscopy in among those other tests that were ordered? You would need a endoscopy to look for celiac (because the damage shows up on the villi in the upper GI tract, the duodenum, not the colon), and the...
  8. Avalon451
    I would guess it would be pretty normal-- I didn't have any unusual bouts of D (at least, unusual for me), though I did feel a bit sore, like muscle soreness, in my belly, the day afterward. By the way, "looks normal" pretty much means nothing-- with advanced celiac they might see some inflammation or scalloping, or "cobblestone" appearance of the surface...
  9. Avalon451
    Glad for you that you got some confirmation! Wow, it's good to have some answers. Good luck with your search for the hidden irritant, hope things settle down for you soon.
  10. Avalon451
    But she was only gluten-free for 2 weeks, so it might be worth trying it, anyway. Know that blood tests in children are especially notorious for false negatives. Be sure they are giving her the full panel... ummm... I forget what all that is, but it's listed in the celiac.com article about testing. And I agree with mommida. Any PCP who says your kids don...
  11. Avalon451
    You might want to take the April 2 appointment, then call every day to see if they've had a cancellation. It's possible that when they see how desperate you are that they'll manage to work you in. My husband did this when he really needed some relief from a specialist. Best of luck! I sure hope your little girl gets some help soon and feels better!
  12. Avalon451
    I'm pretty new at this myself, but from my own research I've read that there are SOME visual things they look for visually, like scalloping on the folds, and a "cobblestone" look to the surface. I had some of those in my endo today; it can be seen it on the pictures. That said, the biopsy is looked at under a microscope to see what kind of shape the...
  13. Avalon451
    Hi, as you probably saw from the post right beneath yours, I just had my endoscopy today. It was not a big deal at all. I can see why you'd be anxious after the ruptured appendix, yikes! Are they putting you completely under, or just sedating you? They gave me a choice, but it was going to be quite a bit longer wait to schedule the one with general...
  14. Avalon451
    I just had my endoscopy this morning. Interesting experience. It didn't bother my throat; I was really worried about the gag reflex since they weren't putting me totally under, just sedated. But it was ok. I do recall vaguely doing some gagging as they removed the tube, maybe a little vomiting, but of course my recall is pretty muddled. Got a bit of a...
  15. Avalon451
    It certainly could. If it's burning and unbelievably itchy, it sure sounds like it. DH "typically" shows up on knees, elbows, butt and scalp, but it can show up ANYWHERE. The first time my 16-year-old daughter showed me her "itchy spot" we thought her bra clasp was irritating the skin on her back. (though she also had the elbows and knees thing; we thought...
  16. Avalon451
    That's great news! Hope you continue to improve and enjoy life more. My endoscopy is tomorrow, so this is my last night before going completely gluten-free. I'm thinking I should take before/after pictures?! I'm looking forward to seeing what improvements I can make in 6 months. Your note is very encouraging!
  17. Avalon451
    We're just in the process, and we were referred to David Susskind at Seattle Children's hospital, a pediatric GI doc. He's reputed to be the best, and we've certainly found him to be very competent, kind, and knowledgeable about celiac. Also really seems to listen and give you a chance to air your questions and opinions. My 16 y.o. presented with dermatitis...
  18. Avalon451
    Hi,PB, welcome! First of all, have you been tested yet? If not, you probably want to get a full celiac blood panel run, to make sure you're heading in the right direction. You do NOT want to go gluten-free before you get this panel-- and if it comes up positive and you go for an endoscopy, you still have to stay glutened for that. If you go gluten-free...
  19. Avalon451
    A friend of mine who is celiac and went gluten-free a year before we did, spent a year in Spain teaching. She recommended Triumph dining cards, which include French and Spanish translations to send back to the kitchen at restaurants. Open Original Shared Link If you've researched celiac much, you probably know that Hashimoto's is especially an indication...
  20. Avalon451
    Hi, so sorry you're not feeling better! I've read so much, though, about people starting the gluten-free diet and then finding out that other things are reacting badly for them. Some people can't handle the gluten-free replacement foods like bread, pasta and bagels-- it's just too much starchy weirdness for your body to recognize that it's different from...
  21. Avalon451
    So glad to hear you got to the bottom of your little boy's scary episode. I understand that some kind of trauma like illness can trigger the celiac gene. So maybe that's why it started with the croup. My worst symptoms were triggered with a stomach flu I had over 7 years ago. What, your insurance won't cover your blood test panel for celiac? that can...
  22. Avalon451
    My daughters have been gluten free for just ten days.There has certainly been moaning, groaning, and mock cries of "Waaahhhh... no more doughnuts!" but for the most part, they are troopers. Today the 9 y.o. came home from school and told me that she and her friend Allie, who sit next to each other, are in the habit of sharing a bit of their desserts...
  23. Avalon451
    My 16 y.o. daughter's DH was diagnosed literally as an aside, while she was visiting her dermatologist for acne. The doctor had stood up and was heading for the door, when she said, "Oh, yeah, we were going to ask you about this rash I have on my elbows and knees..." She thought it was dry skin from cold winters where she was attending school. But it got...
  24. Avalon451
    I'm in the same boat. My 16 y.o. had her biopsy on the 19th, and we went gluten free the next day. That is, we got rid of all the food, checked all the labels, etc. I'm working my way through things like cleaning out the silverware and utensil drawers, scrubbing and relining them... we have a new toaster and cutting boards... I haven't yet replaced tupperware...
  25. Avalon451
    Well, after my 16 y.o. DD's celiac diagnosis, my lifelong symptoms began to make sense. My blood was inconclusive-- a big "maybe" and my doctor thought I should just try the gluten-free diet along with my 3 girls (all positive bloodwork, we're not going to scope the younger two). I wanted a referral to a GI doc and an endoscopy, but he thought I shouldn...
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