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Flor

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Flor

  1. Flor
    Wow, maybe it is the coconut. Who knows! I'll try and make it through a few days without the macaroons...but it's hard to imagine. What do you do for sweet cravings? I did get an answer back from one person on the yahoo site about the availability of O. formigenes -- and he said when he looked into it a while back that the one company that planned...
  2. Flor
    Oh, man you guys, after all this buildup about the yahoo site, it's going to be a huge disappointment! One kind of nice feature, though, if you select it, is to be sent the daily summaries of postings. Otherwise I think they email you every time there's a new posting. The daily summaries come as an email every day and just show the new postings. It's MUCH...
  3. Flor
    Rachel, yes Susan someone runs that yahoo site AND the "sulphurstories" one. She seems to be a researcher at some institute. I don't know the whole story. To join you have to click "join this group" in the upper right corner of the window and fill out a form and write a few words about WHY you want to join and then wait for her to admit you....which only...
  4. Flor
    The role of O.formigenes: Check out the last sentence especially. We have to read all this kidney stone stuff through the lens of "enteric hyperoxaluria" (too much oxalate in the gut) which IS heavily correllated with celiac and other gut diseases. This is an abstract from a 2002 article: "Oxalobacter formigenes and Its Potential Role in Human Health...
  5. Flor
    Someone else on here described the same white stuff coming out of their skin as part of the low oxalate diet, so maybe so! Also, on this sulpher stuff -- which I don't understand -- a woman on the low oxalate yahoo site who has been low oxalate for many years said she had to sort out her sulphur issues -- I've posted back to ask what that means she did...
  6. Flor
    Dear Gluless, It sounds like you have had the most dramatic experience on the low oxalate diet of anyone we've heard from so far. Can I bother you to summarize your experience for us here? Just a quick overview, like how long you've been on it now, how long it took to notice improvement, and how you're feeling now? Thank you for sharing your experience...
  7. Flor
    Rachel! I meant to say THANK YOU for the link to the site about endoscopy and celiac and for clarifying this for me. I'm going to have to decide in the next week I guess whether to go back to eating gluten before my Oct 10 endoscopy/colonoscopy or to cancel it and see how it goes with the low oxalate diet.
  8. Flor
    Let's hope that IS dumping, Aschev! It sounds awful! Keep us posted. I read through a lot of the case studies in the yahoo group last night and they described the dumping symptoms mostly as more frequent urination and behavioral regression in their autistic kids. My cousin has an autistic son and she has a hard time figuring out whether there's anything...
  9. Flor
    Rachel, that's such wonderful news about your not being depressed in the last couple of years. I guess I'm glad the SSRIs are there but they are a very blunt instrument and certainly don't deal with underlying causes very well. The GI doc wanted me to eat gluten because I haven't had a definitive celiac diagnosis. I'd been gluten and dairy free for...
  10. Flor
    And while I'm asking questions, may I ask some more? :-) Robbin, where again is your journal that's mentioned here a couple of times? And then this next question I know opens a whole can of worms, but I can't help myself... I developed anxiety and depression symptoms at the same time that the GI and joint symptoms started -- about 2.5 years ago...
  11. Flor
    Two questions for you all: Having eliminated gluten, dairy, soy, corn, nightshades, and now high oxalate foods, I'm wondering what everyone's experience has been with SUGAR? Also, I'm curious about people's experience with "dumping" once on the low oxalate diet. How quickly did that start, what were the symptoms, and is this something that happens...
  12. Flor
    MILK THISTLE: One more little tidbit... From reading over in the yahoo group I just discovered that Milk Thistle is very high oxalate. I have been taking it daily for almost a year because it was recommended to me for liver cleansing. YIKES! I mention it just in case anyone else here is taking it.
  13. Flor
    WOW, incredible resource at the "trying low oxalates" yahoo group. There's a word document in there called "mechanisms behind the leaky gut" that lays out in great detail how celiac disease is the model for understanding the damage that oxalates and other large molecules the gut normally protects the body from can cause when the gut is leaky. It explains...
  14. Flor
    Jerseyangel, thank you SO much for starting this thread! As you know, I've gotten hot on this topic in the last 24 hours after I stumbled on reference to it buried back on another thread. I'd like a huge banner on this website somewhere for all new people that says: "Have you thought about nightshades and oxalates if you haven't gotten all better going...
  15. Flor
    Thank you everyone! Just went to the health food store and bought all the low oxalate and no nightshade and gluten free food I could find! I'll keep you posted. It's a lot of white food! It would be really lovely if there were a regular place here where those of us trying the no nightshade and/or low oxalate diet could check in about our experiences...
  16. Flor
    Hi you all, thanks so much for the replies. Seems like this nightshade and oxalate issue might be HUGE for everyone on this site. I've been doing some more reading in the medical journals and the studies of enteric hyperoxaluria and these studies seem to always include people with celiac, crohns, IBS, IBD, and ulcerative colitis diagnoses. If the gut...
  17. Flor
    Hi all, I just posted over in the "leaky gut and other food intolerances" section but it looks like here's the thread about oxalates and nightshades. I'm trying to find resources about this oxalate and nightshade issue. My experience has been very similar it sounds like. I went gluten-free and DF a year ago. Huge improvement for a few months and...
  18. Flor
    Hi all, I WAS gluten-free and DF since fall 2007 but then after initial dramatic improvement, the symptoms all came back (diarrhea, gas, pain, etc etc). I'm getting my first colonoscopy/endoscopy done on Oct 10, after several weeks now of being back on gluten (I'd gone gluten-free without a definitive diagnosis). My guts feel about the same back...
  19. Flor
    I've had it since I was a kid (or a baby) -- just on the back of my arms. it's not itchy for me but as an adolescent I couldn't leave it alone and so it was irritated all the time. My husband has it and our son has had it from birth. Interestingly, I did NOT have it while I was pregnant and that's the only time in my life. I ignore it -- it's worse in...
  20. Flor
    Hi you all, wow, thanks for the replies here. I hadn't been checking in so just now got caught up on all this conversation. A few more tidbits: 1. On the name: if I understand this correctly Budeprion (which I took) is the NAME of the generic version of wellbutrin that is manufactured by Teva. Bupropion, I think, is the generic CHEMICAL name of Wellbutrin...
  21. Flor
    Dear friends, I just had a nightmare experience switching from brand name Wellbutrin 300mg to the generic "wellbutrin" called Budeprion 300mg (manufactured by Teva), both extended release. I developed anxiety/depression symptoms at the same time as the celiac ones and have been through quite an "adventure" in pharmacology. But this one merits passing...
  22. Flor
    Hi Dr. Mom, It sounds like your looking at some of the same stuff I am -- I am really curious about this celiac/depression connection. My gut and head and joint symptoms all started at exactly the same time last spring. I was interested to see the scandanavian study that showed that depression didn't always respond to the gluten-free diet as quickly...
  23. Flor
    My joint pain (in my case, mostly hips) started right when my gut symptoms started and they all feel connected to me -- there's an inflammatory process going on. Leaky gut? I also at the same time got some recurring skin inflammations -- gross, like inside my nostrils and scalp. I know a number of folks who manage their joint pain entirely by diet -- no...
  24. Flor
    Hi all, I just posted with similar questions under the Celiac and Behavior section -- about the links between autism, celiac and other chronic head/gut illnesses that seem to be a combo of genetics triggered by enviromental stressors. Latest issue of Discover magazine has an interesting piece on autism research that seemed relevant for Celiac as well...
  25. Flor
    Hi all, Two long-winded questions for you all: 1. My celiac symptoms emerged clearly at exactly the same time as I developed joint pain AND began to have serious problems with anxiety and depression. The research on autism seems to overlap here in terms of making sense of genetic predispositions that are triggered by environmental stressors into auto...
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