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jcc

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Everything posted by jcc

  1. jcc
    Hi Doll, I tried posting a response the other night, but this forum went down for a bit (or at least I couldn't get access back)...and I lost the post. Haven't had the time to redo until now. I don't have time to read the other five pages of responses here, so I apologize if I offer repeat information, but I have a few things to offer. First off...
  2. jcc
    Hi Sue, When your doctors are done running all the tests, and if they conclude you don't have celiac disease.... I hope you will begin a gluten diet for at least six months. Hopefully you might see results much sooner than that. Please check out Open Original Shared Link. Don't miss the pages on diagnostic testing, other autoimmune disease, fibromyalgia...
  3. jcc
    Hi IMResident~ Two studies supporting fecal antibody testing can be found Open Original Shared Link: The antibody screening tests have been reduced to a single anti-tTG test in most cases, Open Original Shared Link... and the antigliadin antibodies are no longer routinely recommended. I completely disagree with that trend, and see it as a move backward...
  4. jcc
    I've also heard of others having hives related to celiac disease/gluten sensitivity. It is not something everyone gets across the board...and some of these reports say RARE, but I've learned rare is never really rare. Open Original Shared Link My alkaline phosphatase was elevated for a year or so and they didn't know why, but it normalized after I discovered...
  5. jcc
    Great story. Kudos to YOU for being smarter than your doctors. Cara
  6. jcc
    Hi Ursula, I certainly didn't mean to add confusion. It is just that gfp used my website as an example...and I wanted to make clear that I haven't had any problems with anything here, and as far as I knew nobody has had a problem with my leaving links to The Gluten File at Open Original Shared Link . If there was a problem with that, I would respect...
  7. jcc
    Hi Marcia~ My daughter had this mall problem, too! Do you know why? I've met many others as well. Is it the lights? smells? people? What??? Panic?? Some people say that panic fits with TLE, but why are malls such a big problem? My daughter did alright in other crowded places, airplanes, etc, but in malls or large stores like IKEA.... she always had problems...
  8. jcc
    Hi~ Thanks for the nice things you've said about my website, gfp, and I think you are using it just as an example, but.... I have actually dropped links on several threads here in reference to specific things like seizures and maybe B12, and as far as I know they have not been deleted, nor been a source of controversy. If they were, due to forum...
  9. jcc
    Hi Patrick, Sorry for my delay. I pop in and out just occasionally and usually only respond to neurology based posts, and then I forget to look back. I never did get an official diagnosis! I had to push my doctor about WHY I was B12 deficient. Her answer was, "some people just need more". I asked for the tests for perncious anemia (anti-intrinsic...
  10. jcc
    Hi Stevel... No, I haven't heard from Hanna recently, although I have since BT crashed. I'm sorry to hear there is sad news. BTW....good news tonight...an temporary BT2 site has been established until the new one returns. Open Original Shared Link Cara
  11. jcc
    BRAINTALK2 Open Original Shared Link Come say hello! This is a temporary site put up by a good guy as a meeting place until we know what is going on with JL/Braintalk. Good guy is Doc John~ Open Original Shared Link Cara
  12. jcc
    My daughter was on Depakote for three years, and tolerated it relatively well, although in the end she had a lot of cognitive dulling. THose of you have noticed that a gluten free diet has helped your seizures, you might want to get your experience out on the EFA website. Have you ever seen Tammy's story? Open Original Shared Link Open Original...
  13. jcc
    There are a few studies and reports that say so, yet when I was exploring gluten/seizures in regard to my daughter six years ago... I couldn't interest anyone! The neurologist plead ignorance (at least he was up front about it ). He also said nutritional deficiencies weren't an issue because she had no signs of vitamin deficiency. (He was looking for...
  14. jcc
    My doctor said my mother may have breathed in unknown toxins while she was pregnant with me???? .... This is much like the unknown bump to the head suggested as the cause for my daughter's seizures I obviously don't think all seizures are related to gluten or other food sensitivity, but I suspect far more are than are being recognized. Same goes...
  15. jcc
    Here are a few other studies/articles about Open Original Shared Link: I am curiously waiting and watching the results of the zonulin trial. I have heard that one prominent celiac expert says it only addresses part of the problem~ but watching this all play out is really interesting. It has implications far beyond celiac disease~ Cara
  16. jcc
    Here is what I have heard....that initially after going gluten free...the symptoms of glutenings may be much worse....this is the 3-6-12 month ranges. But, after being gluten free for a long time >1-2 yrs), the reactions may actually lessen, because the immune system has had a chance to calm down. Of course, repeated glutenings would cause the immune system...
  17. jcc
    Hi Autumn, You may have to be assertive if you have a doctor who tries to laugh you out of the office. Here is one thing I have found on obesity/celiac~ Open Original Shared Link Cara
  18. jcc
    Hi Julie~ I've known several who have gluten related seizures that either went away completely or were greatly reduced/less severe once off gluten. There is a lot of information out there regarding seizures/gluten, and I don't know why our neurologists aren't a little quicker to look for gluten sensitivity/celiac disease in seizure patients with family...
  19. jcc
    Hi Patrick, Have you ever had your B12 level tested? A B12 deficiency can definitely cause those type of symptoms. I've recently heard others say that B1 deficiency can do the same, and also B6 deficiency. I would definitely begin talking 1000mcg of B12 daily along with a good B-complex. I saw big improvements within the first three months. Here are...
  20. jcc
    Hi Nancy! Someone suggested that I put Open Original Shared Link out on a website, so I did. It is not the same, though, because without the forum to go with it...well, its just not the same! It is also missing all the great discussion threads that were attached to each section. But, at least, for those interested in this sort of information..it is still...
  21. jcc
    Sorry to intrude like this...but the Braintalk Gluten Sensitivity/Celiac Disease forum crashed about a month ago and has not returned, and unfortunately some of us have lost touch! I suspect many are scattered among the various other Celiac Forums. I am looking for Karen (founder of MADD (not mothers against drunk drivers)), and mother of Ted. If anyone knows...
  22. jcc
    Hi~ I had urgency, frequency, occasional incontinence, stabbing pain, a feeling of swollen/ numbness... never an infection... my doctor thought I was a nutcase who just liked personal exams ~ but it turned out related to a B12 deficiency...so check that out! Or just take 1000mcg of B12 daily for several months, and see if it helps. I had many other...
  23. jcc
    Hi, I am a regular at Braintalk gluten sensitivity/celiac forum where we had several members there say they enjoyed an improvement of their high blood pressure....some able to reduce or come off medication. I'd point you to the thread...but its gone! The forum crashed big time. jcc
  24. jcc
    Check out the pages on Diagnostic Testing (including Delay of Diagnosis) and Fibromyalgia (there is more "IBS" in there). I agree with others who say that a dietary trial is a wise move. My daughter had only an isolated antigliadin IgG of 30, the weakest of the markers. She had chronic diarrhea for two years and neurological symptoms...and some rashes.....
  25. jcc
    Hi! Braintalk crashed about three weeks ago, and we have no idea when it might be back. Because of the crash somebody suggested I put The Gluten File out on a website...so I have. We've lost some of our data because the back up copy was from June 2005, and of course, we lost all the great discussion threads. This is better than nothing, though, and we hope...
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